Palliative Care for Chronic Cancer Patients in the Community: Global Approaches and Future Applications [1st ed.] 9783030545253, 9783030545260

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Palliative Care for Chronic Cancer Patients in the Community Global Approaches and Future Applications Michael Silbermann Editor

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Palliative Care for Chronic Cancer Patients in the Community

Michael Silbermann Editor

Palliative Care for Chronic Cancer Patients in the Community Global Approaches and Future Applications

Editor Michael Silbermann Middle East Cancer Consortium Haifa Israel

ISBN 978-3-030-54525-3    ISBN 978-3-030-54526-0 (eBook) https://doi.org/10.1007/978-3-030-54526-0 © Springer Nature Switzerland AG 2021 This work is subject to copyright. All rights are reserved by the Publisher, whether the whole or part of the material is concerned, specifically the rights of translation, reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

In memory of the late Professor Ora Gilbar, whom we miss so much—a pioneer in Psycho-Oncology, a distinguished researcher, and a founder of home-care services for cancer patients in Israel. For my friend and mentor Professor A. Hari Reddi who was so catalytic in my scientific journey and from whom so much was learned and shared. For my associate in MECC for over 22 years, Mrs. Genoveba Breitstein.

Foreword

As we speak today, 41 million people die every year from a non-­communicable disease including cancer, tragically 70% of patients who die prematurely are from the developing world. After the landmark meeting on September 11, 2019 at the UNHLM on NCDs, finally the plight of the 40 million souls dying from NCDs was acknowledged. As a result of that historic meeting, we now have ammunition to face this epidemic head on, with an overarching target of reducing mortalities from NCDs by 25% by the year 2025. Since then, governments have adopted 11 targets, which focus mostly on prevention. While prevention and early detection efforts are the cornerstone to stem future cases of NCDs, what can we do about the 41 million people who need treatment and palliation right now? What about the millions of cancer patients silently suffering with pain and disability NOW? The only way to fully understand and internalize the value and urgency of palliative care is when you become the unfortunate witness of its absence. It is when you become a mere bystander and a spectator to a loved one’s face, grimacing with pain for hours on end, day and night, without having the tools to stop the excruciating pain. This is when you truly understand that palliative care is not some luxury treatment that one would choose to adopt or not, it is an emergency need, part and parcel of treatment, and most importantly a human right. So why is there such a severe shortage of palliative care in Low-Middle-­ Income Countries (LMICs)? The issue is certainly not only due to a lack of resources as many would imagine. All countries, even those in the LMICs, are capable of creating and implementing effective cost-effective palliative care strategies and procure the “essential package of palliative care and pain relief list” as launched by the lancet commission report, and virtually every single government is capable of procuring morphine and other opioid drugs. Yes, there are challenges in the shortage of qualified personnel, limited technological capacity, and the merits and shortcomings of hospitals versus homecare settings and other issues. But at its core, money is not the main obstacle: political will and bureaucracy is. Palliative Care for Chronic Cancer Patients in the Community: Global Approaches and Future Applications offers a much-needed account of the current state of global palliative care in the community – the good, the bad, and, especially, the hopeful.

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This extraordinary compendium, with chapters form 46 countries, edited by Professor Michael Silbermann, tells the remarkable stories of palliative care—from grass-root efforts by volunteers in resource-constrained countries such as India to the full integration of palliative care in high-resource countries such as the United Kingdom, New Zealand, and Australia. What is so unique about this book is that it captures the enormous range and diversity of palliative care efforts: some led by nurses (Iran), some led by governments (Turkey), and many led by local charities and non-­governmental agencies. Readers of this textbook can also learn about the challenges of a government-led palliative care initiative in the post-genocide era in Rwanda or the attempts to provide palliative care services in the conflict zones of Iraq, Palestine, and Sudan. Contextual issues requiring cultural sensitivity in Afghanistan, Latin America, and the Middle East present a real picture of both the exceptional leadership and environmental hardships that palliative care advocates face in their journeys forward. Each of the 61 chapters in the book tells a narrative of the country’s own experience, thus creating a source of on-the-ground information outlining the barriers, challenges, and successes as individual efforts progress. Many reports in the book point toward real change and hope as they relate to healthcare providers becoming empowered advocates for their patients. There are high expectations for the role of nurses to continue to grow. Educating and engaging patients, and the families in their care, has had a measurably positive impact on outcomes. This is the first textbook to assemble such an archival resource detailing the activities of community palliative care throughout the world, and the credit goes to Professor Michael Silbermann for bringing all the authors together, both virtually by means of this text and personally through his advocacy for advancing palliative care services in resource-constrained settings. The collaborative spirit of this book gives voice to the incredible vision, tenacity, and resilience of the teams of professionals and their supporters who work in palliative care, particularly those who work in the community. In addition, it underscores that all future efforts can only be successful with the concerted and continuous commitments of governments, academics, and NGOs across and within national boundaries. A big thank you to Professor Silbermann and all the contributors in this book for hearing the cries of pain of all patients from all over the world and for amplifying and transmitting their voices to all decision makers—that no one should have to bear unspeakable pain at a time when we have all the tools for effective palliation at our disposal. HRH Princess Dina Mired President – Union for International Cancer Control (UICC) Amman Jordan

Preface

On September 23, 2019, heads of state and governments assembled at the United Nations and reaffirmed the 2030 Agenda for Sustainable Development and strongly recommitted to achieve universal health coverage by 2030, with a view to scaling up the global effort to build a healthier world for all [1]. As a clinical discipline, palliative care relies on the collaboration of professionals such as nurses, physicians, and social workers who have a fundamental role in running the team. Furthermore, primary care personnel have a central function in this arena—the term “primary care” includes family physicians, medical specialists, pediatricians, geriatricians, general practitioners, nurses from a variety of settings (homecare, community care), social workers, pharmacists, physiotherapists, occupational therapists, and volunteers [2]. In the community, this requires a cooperative approach between the primary care and the palliative care specialists, both within the community and among experts in the hospital. With the aging of the population, patients suffer multiple comorbidities and, consequently, there is an increasing demand for palliative care specialist support [2]. Primary care practitioners with core competencies in palliative care and with access to specialist palliative care teams should manage most patients and families. To date, physicians in the community feel ill-prepared to deal with patients with palliative care needs due to the lack of training in pain and symptom management as well as psychological issues regarding patients and their family caregivers. Thus, the most urgent need is to train physicians, nurses, and social workers in the community to be able to practice basic palliative care principles. One critical element that must be available to support caregivers is access to skilled homecare nursing 24/7. Utilizing other providers, such as paramedics trained in palliative care, could fill some of the voids where round-the-­ clock home visits are not feasible [2]. Palliative care RNs have a pivotal role in community palliative care services. Not only do they treat, advise, and help with treatment planning, they also assist in coordinating appropriate and timely care in the various institutions where the patients and families wish the care to take place. In straightforward situations, the palliative care nurse may simply advise the primary care physician after consulting with a palliative care specialist. In a recent Canadian Expert Consensus White Paper, the authors recommend ix

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staffing a palliative care team in the community—recommendations that are applicable in many developed countries, but not yet in the developing world. It is the profession’s obligation to ensure equitable availability of palliative care for rural and other vulnerable populations [3]. Lest we forget, the goal of palliative care is not just to save lives, but to also alleviate suffering. Yes, suffering is difficult to measure and even harder to understand, yet alleviating the suffering (be it physical or emotional) should guide us throughout. In many cases of chronic cancer, the initial step in alleviating patients’ suffering is pain control. All those working in the field have experienced how unrelenting, agonizing pain impacts individuals and families and the magnitude of the hardship it engenders. Unfortunately, there is very limited access to medication for moderate and severe pain, particularly in low- and middle-income countries. The Lancet Commission on Palliative Care and Pain Relief estimates that less than two percent of opioids (morphine, oxycodone, fentanyl) needed for palliative care patients are provided in low-income countries [4]. Under-treatment of severe pain is reported in more than 150 countries, accounting for about 75 percent of the world’s population. At least five billion people live in countries affected by the crisis of underconsumption and more than 18 million die annually with untreated, excruciating pain [5]. Lack of availability and limited access to opioids creates profound global health inequity and threatens the capacity of many countries to achieve Universal Health Coverage—the 2030 Agenda for Sustainable Development promises to leave no one behind. In recent years, the increased non-medical usage of opioids has posed an alarming public health risk, and to safeguard the rational use of these medicines, local authorities must empower healthcare professionals to prescribe, dispense, and administer them according to the individual medical needs of patients; this is especially important at the level of the primary healthcare system. The problem of non-medical consumption of opioids underscores the importance of implementing basic mandatory training for all healthcare professionals, specifically family physicians and internal medicine specialists in the community. The recently released 2019 World Drug Report confirms that “most of the morphine found in illicit markets originates from illicitly produced opium and only small quantities of morphine are likely to be diverted from licit manufactures to illicit markets” [6]. Accordingly, this year, the World Health Organization (WHO) came out with a new “WHO Guidelines for the Pharmacological and Radiotherapeutic Management of Cancer Pain in Adults and Adolescents” [7]. As already mentioned, in the greater part of the world, there is an urgent need for basic palliative care services in the community; one important reason for this is the insufficient awareness of palliative care among primary healthcare providers as well as the extreme shortage of palliative care specialists in the region. More recently, an innovative intervention—Project Extension for Community Healthcare Outcomes–Palliative Care in Africa—was conducted in several sub-Saharan countries [8]. One of the important things learned was the necessity to reach out to the primary care providers in the community and

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to develop the curriculum and best practices based on local palliative care requirements. Also, local caregivers gained confidence in titrating opioids for pain control, using non-opioid analgesics appropriately, and learned to address communication issues related to end-of-life care.

In Summary While inhabitants of developing countries comprise most of the global population, there are still significant barriers to providing community palliative care services to patients with chronic diseases. These include limitations of available workforce, lack of palliative care education, and differences in cultural competencies. We are confident that by expanding access to palliative care in these areas, pain and symptom management will improve and provide better patient and caregiver satisfaction along with diminishing the occurrence of potentially aggressive end-of-life care [9]. How to improve access remains an important issue and, in recent years, new frameworks have been developed to evolve strategies such as telehealth, community-academic partnerships, and, above all, more training for community professionals. Haifa, Israel

Michael Silbermann

References 1. Political declaration of the high-level meeting on universal health coverage. “Universal health coverage: moving together to build a healthier world”. Co-facilitators’ text (REV.4), 12 July 2019. 2. Henderson JD, Boyle A, Herx L, Alexiadis A, Barwich D, Connidis S, Lysecki D, Sinnarajah A. Staffing a specialist palliative care service, a team-based approach: expert consensus white paper. J Palliat Med. https://doi.org/10.1089/jpm.2019.0314. 3. Khan CP, Praver S, Lesch JK, DiGioia K, Gaglio B, Daugherty S, Clauser SB, Arora NK. Comparative clinical effectiveness research focused on community-based delivery of palliative care: overview of the patient-centered outcomes research institute’s funding initiative. 22 August 2019. https://doi.org/10.1089/jpm.2019.0370. 4. Knaul FM, Farmer PE, Krakauer EL, et al. Alleviating the access abyss in palliative care and pain relief – an imperative of universal health coverage: the lancet commission report. 2018;391:1391–1454. 5. Connor SR, Sepulveda MC editors. Global atlas of palliative care at the end of life. London: UK/Geneva CH: WHPCA/WHO; 2014. Available at https://www.who.int/ nmh/Global_Atlas_of_Palliative_Care.pdf. 6. UNODC.  The world drug report 2019. https://wdr.unodc.org/wdr2019/prelaunch/ WDR19_Booklet_3_DEPRESSANTS.pdf. 7. Development of WHO guidelines for the management of cancer pain in adults. https:// www.who.int/ncds/management/palliative-care/cancer_pain_guidelines/en/. 8. Yennurajalingam S, Amos CE, Weru J, Opare-Lokko E, Arthur JA, Nguyen K Extension for community healthcare outcomes-palliative care in africa program: improving access to quality palliative care. J Global Oncol. 2019. https://doi.org/10.1200/JGO.19.00128. 9. Conlon MS, Caswell JM, Santi SA, Ballantyne B, Meigs ML, Knight A, Earle CC, Hartman M. Access to palliative care for cancer patients living in a northern and rural environment in Ontario, Canada: the effects of geographic region and rurality on end-­ of-­life care in a population-based decedent cancer cohort. Clinical medicine insights: oncology. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6378418/2019.

Acknowledgments

When the Middle East Cancer Consortium (MECC) was established in 1996, it created a regional cancer registry network, which was then lacking in the Middle East. Very soon it became apparent that about 70 percent of all cancer patients in the region saw a physician for the first time when their illness had already reached Stage III or IV, which, for most patients, was critical as it would be too late for any curative treatment. Unfortunately, at that time, palliative care was not practiced in most countries; the situation has increasingly improved throughout the years in major cancer centers and university hospitals such as the King Hussein Cancer Center in Amman, Jordan; the National Cancer Institute in Cairo, Egypt; the Rabin Beilinson Medical Center in Israel; the A.Y.  Ankara Oncology Education and Research Hospital in Turkey; and Tawam Hospital in the United Arab Emirates. There were only a few countries that had developed palliative care services in the community: Cyprus (Cyprus Anti-Cancer Society and the Cyprus Association of Cancer Patients and Friends), Israel (Clalit Health Care Services, Sabar Health), and, more recently, Palestine (the Al-Sadeel Society for Palliative Care) and Turkey (the Pallia-Turk project). Realizing this critical situation, especially in the community, MECC embarked on regional training programs focusing on primary healthcare professionals (physicians, nurses, social workers, pharmacists, and volunteers). It was evident that there was an unmet need for improving access to palliative care services in the community offering support to patients and their caregivers living with advanced illnesses. Furthermore, as the proportion of older adults in the population continues to grow, the urgency for more innovative health care services to meet this growing demand increases. Our goal has been to ensure that vulnerable and at-risk populations have equitable access to palliative care. We were not surprised to discover a great interest in our activities in countries beyond the Middle East, as we had trainees in our training courses (especially nurses) from Turkey, Lebanon, Israel, Palestine, Jordan, Egypt, Sudan, Morocco, Algeria, Uganda, Iraq, Iran, Saudi Arabia, Sultanate of Oman, United Arab Emirates, Qatar, Yemen, Pakistan, and Cyprus. These training courses were conducted in close association with the American Society of Clinical Oncology (ASCO) and the American Oncology Nursing Society (ONS). These ongoing fruitful activities were supported by the National Cancer Institute at the NIH, Bethesda, Maryland, and by local governments and NGOs. MECC would not have accomplished these achievements without xiii

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the exceptional support of Donna E. Shalala, Former Secretary of Health and Human Services during the Clinton Administration (1993–2000) whose ongoing encouragement helped us overcome the regional political conflicts. The issue of caring for chronic cancer patients in the community still poses a genuine problem in Africa, Asia, some European countries, and Latin America; as palliative care moves beyond the inpatient hospital setting to outpatient community settings, our teams in the Middle East (along with other colleagues from all five continents) decided to publish a new book on the topic. I am grateful to Springer Nature for giving us the opportunity to bring together ideas, views, and suggestions concerning these matters. We hope that this comprehensive book will serve as a useful resource for all those interested in developing proper community treatment centers and facilities, each in his or her own country, including clergy, clinicians, health system leaders, and policy makers. The authors, representing both developed and developing countries, provide valuable information on this yet unsolved grave problem. We would have no book without the drive, endurance, good will, and collaboration of all the authors. I would like to thank each one again, as it is due to their ongoing endeavors that patients and their families around the world are the recipients of these important services upon returning home from the hospital. We know that most cancer patients prefer to spend the end-­ of-­life period at home in their community, and it is our urgent task to create the optimum conditions for a restful passing in comfort and privacy, surrounded by their beloved family members and friends. Michael Silbermann Middle East Cancer Consortium Haifa, Israel

Contents

Part I North America: USA  he Role of the Palliative Care Team in Keeping T Pediatric Oncology Patients at Home����������������������������������������������������   3 Theresa Huntley and Adam Sterman I nformation Technology Tools for Palliative Care for Populations ����������������������������������������������������������������������������������������  15 Richard R. Love and Sheikh I. Ahamed  odels of Community-Based Palliative Care���������������������������������������  29 M Scharlotte Spencer and Sandra Gomez Role of the Nurse in the Palliative Care Community���������������������������  39 Jeannine Brant and Regina M. Fink  nderstanding the Impact of Community-Based U Palliative Care������������������������������������������������������������������������������������������  49 Phyllis Whitehead, Senaida Keating, Shereen Gamaluddin, Carolyn White, Christi Stewart, and Kye Y. Kim Culture and Palliative Care��������������������������������������������������������������������  65 Lodovico Balducci Part II Latin America: Guatemala  ediatric Hospice Experience in Guatemala: Our History������������������  75 P Linda Marisol Bustamante, Silvia Rivas, and Patricia Valverde Part III Western Europe: France  arly Integrated Palliative Care in Oncology: Organizational E Challenges and Perspectives in France��������������������������������������������������  83 Rana Istambouly Part IV Western Europe: Italy  he Role of the Physician in the Community in Running the T Palliative Care Interdisciplinary Team: “Thinking out Loud” ���������� 107 Paolo Tralongo, Aurelio Saraceno, Fabrizio Romano, Daniela Respini, and Annamaria Di Mari xv

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Part V Western Europe: Portugal  he Importance of the Interdisciplinary Team in Running T Palliative Care Services in the Community ������������������������������������������ 121 Bruna Burmeister, Sofia Amado Durão, Carla Marinho Teves, Rita Cunha Ferreira, Ana Sofia Simões, Tânia dos Santos Afonso, and Manuel Luís Vila Capelas Part VI Western Europe: Spain  atients Suffering from a Chronic, Irreversible Illness: P A Novel Study on the Psychological Intervention out of the Hospital������������������������������������������������������������������������������������ 133 David Rudilla, Amparo Oliver, Laura Galiana, Claudia Valenzuela, and Julio Ancochea  ommunity Palliative Care in Spain: The Critical Role C of Nursing in Its Development���������������������������������������������������������������� 145 Maria Paz Fernández-Ortega and Julio César de la Torre-Montero  ollaborative Efforts in Developing Pediatric C Oncology and Palliative Care Services in the  Hispano-American and African Countries�������������������������������������������� 153 Wilson Astudillo-Alarcón, J. Antonio Salinas-­Martin, Jhon Comba Miranda, and Zemilson Bastos Brandão Souza Part VII United Kingdom  ransforming End-of-Life Care Through Advance Care T Planning and Sharing of Information Digitally������������������������������������ 171 Julia Riley and Joanne Droney  outine Data and Minimum Datasets for Palliative Cancer R Care in Sub-Saharan Africa: Their Role, Barriers and Facilitators���������������������������������������������������������������������������������������� 179 Matthew J. Allsop, Johnblack Kabukye, Richard A. Powell, and Eve Namisango Part VIII Eastern Europe: Poland  alliative Home Care in Poland: From Times of Political P Turnovers to a Well-Structured Integrated System������������������������������ 195 Aleksandra Ciałkowska-Rysz and Aleksandra Kotlińska-Lemieszek Part IX Southern Europe: Croatia  alliative and Hospice Care in the Republic of Croatia: P An Overview and Personal Experience�������������������������������������������������� 203 Renata Dobrila-Dintinjana and Marin Golčić

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Part X Southern Europe: Montenegro Palliative and Supportive Care in Oncology in Montenegro �������������� 211 Nada Cicmil-Sarić Part XI North Africa: Egypt  he Critical Contribution of an NGO to the Development T of Palliative Care Services in the Community – Encouraging Outcome of the Tanta Project in Egypt�������������������������������������������������� 219 Mohamed Ahmed Hablas Part XII North Africa: Sudan  epublic of Sudan - Palliative Care - Hope for the Future������������������ 231 R Geraldine Damanhuri and Mohja Marhoom Part XIII North Africa: Morocco  ancer and Palliative Care in Morocco ������������������������������������������������ 243 C Asmaa El Azhari  sycho-oncological Support for Children with Cancer P and Their Parents: The Soleterre Foundation Experience With the PIOP’s Program ���������������������������������������������������������������������� 249 Imane Benlekbir and Damiano Rizzi Part XIV East Africa: Kenya  rovision of Palliative Care Services for Cancer Patients P in the Community in Africa�������������������������������������������������������������������� 259 John K. Weru and Esther W. Nafula Part XV East Africa: Uganda Current State of Palliative Care in Uganda������������������������������������������ 267 Elizabeth Namukwaya, Amos Deogratius Mwaka, Eve Namisango, Mark Donald Mwesiga, and Julia Downing Part XVI East Africa: Rwanda  alliative Care: Challenges and Opportunities – A Comparison P of the Fee-for-Service System of the United States with Rwanda’s Public Health Approach�������������������������������������������������������� 281 Christian R. Ntizimira, Blaise Uhagaze, Olive Mukeshimana, Eric Kabisa, Scholastique Ngizwenayo, Sandra Urusaro, and Mary L. Dunne

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Part XVII West Africa: Cameroon  alliative Care for Cancer Patients in Rural Central Africa: P Experiences from Cameroon������������������������������������������������������������������ 295 Dina Bell Esther Hortense Murielle and Catherine D’Souza Part XVIII Middle East: Cyprus  ollaboration Between Palliative Care and Oncology C Services and Global Models of Integration ������������������������������������������ 305 Haris Charalambous, Kyriakos Stylianides, and Sophia Nestoros Part XIX Middle East: Iran  he Role of the Nurse in the Community in Running T the Palliative Care Interdisciplinary Team: The Iranian Experience������������������������������������������������������������������������������������������������ 317 Maryam Rassouli, Leila Khanali Mojen, Azam Shirinabadi Farahani, and Samira Beiranvand Part XX Middle East: Iraq The Current Situation of Palliative Care Services in Iraq ������������������ 341 Samaher Abdulrazzaq Fadhil and Hasanein H. Ghali Part XXI Middle East: Israel  he Current Status of Pediatric Palliative Care at T Home – The Israeli Perspective�������������������������������������������������������������� 353 Sergey Postovsky and Myriam Weyl-Ben-Arush Part XXII Middle East: Jordan  ommunity-Based Palliative Care in the Arab Region: C Current Status and Future Directions �������������������������������������������������� 361 Loai Mohammad Abu Sharour, Huda Al-Noumani, Suleiman Al Sabei, Iman Al Hashmi, Maryam Al Harrasi, and Basma Al-Yazidi Part XXIII Middle East: Lebanon  he Physician’s Role in Running a Palliative Care T Service in the Community: The Lebanon Experience�������������������������� 379 Ramzi R. Hajjar  alliative Care in Lebanon: From Inception to Implementation�������� 389 P Myrna A. A. Doumit Part XXIV Middle East: Palestine  alliative Care for Palestinian Chronic Cancer Patients P in the Community������������������������������������������������������������������������������������ 399 Mohamad H. Khleif

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Part XXV Middle East: Turkey  ediatric Palliative Care in the Community: The Turkish P Experience������������������������������������������������������������������������������������������������ 407 Rejin Kebudi and Fatma Betul Cakir  he Role of the Community Nurse in Developing T Palliative Care Services �������������������������������������������������������������������������� 413 Ayfer Aydin  aring for the Cancer Patient in the Community: C In Mind, Body and Spirit������������������������������������������������������������������������ 425 Gonca Tuncel-Oguz Part XXVI Middle East: Yemen  revalence and Management of Cancer Pain P in Developing Countries�������������������������������������������������������������������������� 435 Gamal Abdul Hamid Part XXVII Central Asia: Afghanistan  alliative Care: The Care That Is Rarely Practiced P in Health System of Afghanistan������������������������������������������������������������ 447 Maihan Abdullah, Najia Niazi, and Musa Pakteen Part XXVIII Central Asia: Armenia Palliative Care for Cancer Patients in Armenia: A Silent Pain ���������� 457 Narine Movsesyan, Nune Karapetyan, Gevorg Tamamyan, and Jemma Arakelyan Part XXIX Central Asia: Kazakhstan  obile Teams in Kazakhstan: Improving Cancer M Patients’ Access to Palliative Care���������������������������������������������������������� 469 Gulnara Kunirova, Dilyara Kaidarova, and Tolganai Ansatbayeva Part XXX South Asia: Pakistan  rovision of Palliative Care for Oncological Patients P in Pakistan: A Review of Challenges and Current Practices �������������� 479 Muhammad Atif Waqar, Nasreen Muhammad Saleem, and Muhammad Shamvil Ashraf Part XXXI South Asia: India  ollaborative Programmes Between Government C and Civil Society: Scope, Challenges and Models�������������������������������� 489 Suresh Kumar, Libby Sallnow, and Heather Richardson  he Role of the Palliative Care Team in Keeping T Paediatric Oncology Patients at Home�������������������������������������������������� 497 Mary Ann Muckaden

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Part XXXII South Asia: Indonesia  xperiences in Extending Palliative Care E to Neuro-Oncology Patients in Indonesia���������������������������������������������� 507 Tiara Aninditha, Henry R. Sofyan, Feranindhya Agiananda, and Jonathan Odilo  stablishment of Home-Based Pediatric Palliative Care: E The Indonesian Experience�������������������������������������������������������������������� 513 Lynna Chandra and Ying Pin Toh Part XXXIII South Asia: Thailand  etwork of Primary Palliative Care in Thailand: N A Prototype Driven by Education���������������������������������������������������������� 521 Srivieng Pairojkul Part XXXIV Far East: China  ommunity Hospice Care for Cancer Patients in China �������������������� 535 C Lili Tang Part XXXV Far East: Japan  he Role of the Home-Visit Nursing System T in the Treatment of Terminal Cancer Patients in Japan���������������������� 543 Tomoko Majima, Junko Kusunoki, and Tomoko Otsuka Part XXXVI Far East: Korea I n Vivo Study of Laser Irradiation Techniques for the Treatment and Palliation of Lung Cancer Using Photodynamic Therapy���������������������������������������������������������������� 551 Necla Kenar and Hyun Soo Lim Part XXXVII Far East: Philippines  ommunity-Based Palliative Care for Chronic Cancer C Patients in the Philippines ���������������������������������������������������������������������� 563 Maria Minerva P. Calimag Part XXXVIII Oceania: Australia  ustralian Palliative Care for Chronic Cancer Patients A in the Community������������������������������������������������������������������������������������ 575 Tim Luckett, Meera Agar, and Jane Phillips Part XXXIX Oceania: New Zealand  alliative Care for Chronic Cancer Patients: Global P Approaches and Future Applications New Zealand ���������������������������� 585 Catherine D’Souza Index���������������������������������������������������������������������������������������������������������� 589

Contents

Contributors

Maihan  Abdullah, MD National Cancer Control Program, Ministry of Public Health, Kabul, Afghanistan Loai Mohammad Abu-Sharour, RN, MSN (hon), PhD  Faculty of Nursing Al-Zaytoonah University of Jordan, Amman, Jordan Meera Agar, MBBS [Hons], MPC, PhD  IMPACCT – Improving Palliative, Aged and Chronic Care through Clinical Research and Translation – Faculty of Health, University of Technology Sydney, Sydney, NSW, Australia South Western Sydney Clinical School, University of New South Wales, Sydney, NSW, Australia Ingham Institute for Applied Medical Research, Sydney, NSW, Australia Feranindhya Agiananda, MD  Department of Psychiatry, Awal Bros West Hospital, Jakarta, Indonesia Sheikh  I.  Ahamed, PhD Department of Computer Science, Marquette University, Milwaukee, WI, USA Matthew J. Allsop, PhD  Leeds Institute of Health Sciences, University of Leeds, Leeds, UK Julio  Ancochea, MD PhD  Pneumology, La Princesa University Hospital, Madrid, Spain Autonomous University of Madrid, Madrid, Spain Tiara  Aninditha, MD Department of Neurology Cipto Mangunkusumo General Hospital, Faculty of Medicine Universitas Indonesia, Jakarta, Indonesia Tolganai Ansatbayeva, MD  Almaty Oncology Center, Kazakh Institute of Oncology and Radiology, Almaty, Republic of Kazakhstan Jemma  Arakelyan, MD  Department of Oncology, Yerevan State Medical University, Yerevan, Armenia Chemotherapy Department of Adult Solid Tumors, Hematology Center after Prof. R. Yeolyan, Yerevan, Armenia Muhammad Shamvil Ashraf, MD  Indus Health Network and Consultant Pediatric Oncology, The Indus Hospital, Karachi, Pakistan

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Wilson Astudillo-Alarcón, MD  Paliativos Sin Fronteras / Palliative without Borders, San Sebastián, Spain, Spain Ayfer Aydin, RN, PhD  Faculty of Nursing, Koç University, Istanbul, Turkey Asmaa El Azhari, MD  Palliative Care Department, Mohammed VI Center for the Treatment of Cancers, UHC Ibn Rochd Casablanca, Casablanca, Morocco Lodovico  Balducci, MD H.  Lee Moffitt Cancer Center and Research Institute, Tampa General Hospital, Tampa, FL, USA Samira  Beiranvand, PhD Department of Nursing, Student Research Committee, School of Nursing and Midwifery, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran Imane Benlekbir, MSC  Psychology, Education Science, Rabat, Rabat Salé Zamour Zeir, Morocco Jeannine Brant, PhD, APRN-CNS, AOCN, FAAN  Billings Clinic Cancer Center and Collaborative Science & Innovation Department, Billings, MT, USA Bruna Burmeister, MD, MSc  Universidade Católica Portuguesa, Institute of Health Sciences, Centre for Interdisciplinary Research in Health (CIIS), Portuguese Observatory for Palliative Care, Lisbon, Portugal Linda  Marisol  Bustamante, MD National Unit of Pediatric Oncology, Guatemala, Guatemala Fatma  Betul  Cakir, MD Bezmialem Vakif University Medical Faculty, Pediatric Hematology-Oncology, Istanbul, Turkey Maria Minerva P. Calimag, MD, PhD  Faculty of Medicine and Surgery, The Research Center for Social Science and Education and The Research Center for the Health Sciences, University of Santo Tomas, Manila, Philippines Manuel  Luís  Vila  Capelas, RN, MSc, PhD Universidade Católica Portuguesa, Institute of Health Sciences, Centre for Interdisciplinary Research in Health (CIIS), Portuguese Observatory for Palliative Care, Lisbon, Portugal Lynna  Chandra, BEc Rachel House (Yayasan Rumah Rachel), Jakarta, Indonesia International Children’s Palliative Care Network, Assagay, South Africa Haris  Charalambous, BM, MRCP (UK), FRCR (UK)  Bank of Cyprus Oncology Center, Nicosia, Cyprus Aleksandra Ciałkowska-Rysz, MD, PhD  Clinical Department of Palliative Medicine, Medical University of Lodz, ŁódŹ, Poland Nada  Cicmil-Sarić, MD  Clinical Center for Oncology and Radiotherapy, Clinical Center of Montenegro, Podgorica, Montenegro Geraldine Damanhuri, CNS  Comboni College of Science and Technology, Khartoum, Sudan

Contributors

Contributors

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Amos  Deogratius  Mwaka, MD Department of Medicine, School of Medicine, College of Health Sciences, Makerere University, Kampala, Uganda Renata  Dobrila-Dintinjana, PhD, MD Department of Radiotherapy and Oncology, Clinical Hospital Center Rijeka, Rijeka, Croatia Myrna A. A. Doumit, PhD, RN, FAAN  Alice Ramez Chagoury School of Nursing, Lebanese American University, Beirut, Lebanon Julia  Downing, RN, PhD Palliative Care Education and Research Consortium, Kampala, Uganda Department of Medicine, School of Medicine, College of Health Sciences, Makerere University, Kampala, Uganda International Children’s Palliative Care Network, Assagay, South Africa Joanne  Droney, FRCP, PhD The Royal Marsden and Royal Brompton Palliative Care Service, The Royal Marsden NHS Foundation Trust, London, UK Catherine D’Souza, MbChB, MRCP, BSC  South Canterbury Hospice and District Health Board, Timaru, New Zealand Cameroon Baptist Convention and Hospice Africa, Bamenda, Cameroon Mary  L.  Dunne, MD Supportive Care Medicine, Nuvance Health, Poughkeepsie, NY, USA Distinguished Careers Institute, Stanford University, Stanford, CA, USA Sofia Amado Durão, MD, MSc  Universidade Católica Portuguesa, Institute of Health Sciences, Centre for Interdisciplinary Research in Health (CIIS), Portuguese Observatory for Palliative Care, Lisbon, Portugal Hematology and Marrow Transplantation Service – Centro Hospitalar Lisboa Norte, Lisbon, Portugal Elizabeth Namukwaya, MA, PhD  Palliative Care Education and Research Consortium, Kampala, Uganda Department of Medicine, School of Medicine, College of Health Sciences, Makerere University, Kampala, Uganda Dina  Bell  Esther  Hortense  Murielle, MD Bonassama District Hospital, Douala, Littoral, Cameroon Samaher  Abdulrazzaq  Fadhil, MD, FICMS and CABP (ped), FICMS  Children Welfare Teaching Hospital, Medical City, Baghdad, Iraq Azam  Shirinabadi  Farahani, PhD, RN Pediatric Nursing Department, School of Nursing & Midwifery, Shahid Beheshti University of Medical Sciences, Tehran, Iran Maria  Paz  Fernández-Ortega, PhD, MSc, RN, Psych Institut Català d’Oncologia and University of Barcelona, Barcelona, Spain Rita  Cunha  Ferreira, MD, MSc Universidade Católica Portuguesa, Institute of Health Sciences, Centre for Interdisciplinary Research in Health (CIIS), Portuguese Observatory for Palliative Care, Lisbon, Portugal

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Home Palliative Care Team of ACES Lisboa Ocidental/Oeiras, ARSLVT, Lisbon, Portugal Regina  M.  Fink, PhD, APRN-CNS, AOCN, CHPN, FAAN  Division of General Internal Medicine, Department of Medicine, School of Medicine, University of Colorado, Aurora, CO, USA Laura Galiana, PhD  University of Valencia, Valencia, Spain Shereen  Gamaluddin, MD Centra Health Palliative Care Service, Lynchburg, VA, USA Hasanein  H.  Ghali, MD  Department of Pediatrics, College of Medicine, University of Baghdad, Children Welfare Teaching Hospital, Medical City, Baghdad, Iraq Marin  Golčić, MD Department of Radiotherapy and Oncology, Clinical Hospital Center Rijeka, Rijeka, Croatia Sandra  Gomez, MD, FAAHPM Department of Palliative Care and Rehabilitation Medicine, M.D. Anderson Cancer Center, University of Texas, Houston, TX, USA Mohamed Ahmed Hablas, MD  Palliative Care, Gharbiah Cancer Society, Tanta, Egypt Ramzi R. Hajjar, MD  Department of Internal Medicine, Geriatric Medicine Service, American University of Beirut Medical Center, Beirut, Lebanon Gamal  Abdul  Hamid, PhD, MD Clinical Laboratory and Hematology Faculty of Medicine, University of Aden, Aden, Yemen Maryam  Al Harrasi, RN, PhD College of Nursing, Sultan Qaboos University, Muscat, Oman Iman Al Hashmi, RN, PhD  College of Nursing, Sultan Qaboos University, Muscat, Oman Theresa  Huntley, RN, MA, MSW, LICSW Department of Oncology, Pediatric Cancer and Blood Disorders Program, Children’s Hospitals and Clinics of Minnesota, Minneapolis, MN, USA Rana Istambouly, MD, PhD  PHD student in health management, Université Paris-Est, IAE Gustave Eiffel, Creteil, France Member of the national scientific committee for palliative medicine (SFAP), Paris, France Member of the scientific committee of Center for Investigation and Research in Organizational Resilience (CIRERO), Paris, France President and founder of the association of early palliative medicine (MEDPALLIAP), Paris, France Eric  Kabisa, MPH Rwanda Palliative Care and Hospice Organization, Kigali, Rwanda Johnblack  Kabukye, MBChB, MSc Uganda Cancer Institute, Kampala, Uganda

Contributors

Contributors

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Dilyara Kaidarova, MD, PhD  Kazakh Institute of Oncology and Radiology, Kazakhstan Association of Oncologists, National Academy of Sciences, Almaty, Republic of Kazakhstan Nune  Karapetyan, MD, MPH Department of Oncology, Yerevan State Medical University, Yerevan, Armenia Chemotherapy Department of Adult Solid Tumors, Hematology Center after Prof. R. Yeolyan, Yerevan, Armenia Senaida Keating, MD  Virginia Tech Carilion School of Medicine, Roanoke, VA, USA Veterans Affairs Medical Center, Salem, VA, USA Rejin  Kebudi, MD Pediatric Hematology-Oncology, Oncology Institute, Istanbul University & Istanbul Medical Faculty, Istanbul University, Istanbul, Turkey Necla  Kenar, PhD Department of Physics, Faculty of Arts and Science, Kocaeli University, Izmit-Kocaeli, Turkey Mohamad H. Khleif, PhD  Al-Sadeel Society for Palliative Care for Cancer and Chronic Diseases, Bethlehem, Palestine Kye  Y.  Kim, MD Department of Psychiatry and Behavioral Medicine, Virginia Tech Carilion School of Medicine, Roanoke, VA, USA Carilion Roanoke Memorial Hospital Palliative Care Service, Roanoke, VA, USA Carilion Center for Healthy Aging, Roanoke, VA, USA Aleksandra  Kotlińska-Lemieszek, MD, PhD Department of Palliative Medicine, Poznan University of Medical Sciences, Poznan, Poland Suresh Kumar, MB, BS, DA, MA  Institute of Palliative Medicine, WHO Collaborating Center for Community Participation in Palliative Care and Long Term Care, Kozhikode, Kerala, India Gulnara  Kunirova, DPsy Kazakhstan Association for Palliative Care (KAPC), Together Against Cancer Foundation, International Association for Hospice and Palliative Care (IAHPC), Almaty, Republic of Kazakhstan Junko  Kusunoki, RN, PHN, MNSc Graduate School of Nursing, Chiba University, Chiba, Japan Hyun  Soo  Lim, PhD  Department of Electric and Electronic Engineering, Faculty of Technology, Sakarya University of Applied Science, Serdivan-­ Sakarya, Turkey Department of Biomedical Engineering, School of Medicine, Chungnam National University, Daejeon, South Korea Richard  R.  Love, MD Department of Computer Science, Marquette University, Milwaukee, WI, USA Tim  Luckett, PhD  IMPACCT  – Improving Palliative, Aged and Chronic Care through Clinical Research and Translation  – Faculty of Health, University of Technology Sydney, Sydney, NSW, Australia

Contributors

xxvi

Tomoko Majima, RN, PhD  Graduate School of Nursing, Chiba University, Chiba, Japan Annamaria Di Mari, MD  Medical Oncology Unit, Umberto I Hospital – RAO, Siracusa, Italy Mohja Marhoom, MBBS  Sudan Medical Specialization Board, Khartoum, Sudan Jhon  Comba  Miranda, MD  Department of Pathology, Univeristario Donosti, San Sebastián, Guipúzcoa, Spain

Hospital

Leila  Khanali  Mojen, PhD, RN Medical-Surgical Nursing Department, School of Nursing & Midwifery, Shahid Beheshti University of Medical Sciences, Tehran, Iran Narine Movsesyan, MD  Department of Anesthesiology and Intensive Care, Yerevan State Medical University, Yerevan, Armenia Mary Ann Muckaden, MD, MSc  Department of Palliative Medicine, Tata Memorial Center, Mumbai, India Olive  Mukeshimana, MD, Dip Kibagabaga District Hospital, Kigali, Rwanda Mark Donald Mwesiga, MMS, MSc  Palliative Care Association of Uganda, Kampala, Uganda Esther W. Nafula, MD, MPall  HCG-CCK Cancer Centre, Nairobi, Kenya Eve  Namisango, PhD African Palliative Care Association, Kampala, Uganda Cicely Saunders Institute, King’s College London, London, UK Sophia Nestoros, MD, MSc  Cyprus Anti-Cancer Society, Nicosia, Cyprus Scholastique  Ngizwenayo, SW Kibagabaga District Hospital, Kigali, Rwanda Najia Niazi, MA  The Cancer Center at Jumhuriat Hospital, National Cancer Control Program, Ministry of Public Health, Kabul, Afghanistan Huda Al-Noumani, RN, PhD  College of Nursing, Sultan Qaboos University, Muscat, Oman Christian  R.  Ntizimira, MD, MSc City Cancer Challenge Foundation, Kigali, Rwanda Jonathan Odilo, MD  Universitas Indonesia Hospital, Faculty of Medicine Universitas Indonesia, Jakarta, Indonesia Amparo Oliver, PhD  University of Valencia, Valencia, Spain Tomoko Otsuka, RN, PhD  Graduate School of Nursing, Chiba University, Chiba, Japan Srivieng  Pairojkul, MD Karunruk Palliative Care Center, Faculty of Medicine, Khon Kaen University, Khon Kaen, Thailand

Contributors

xxvii

Musa  Pakteen, BSc The Cancer Center at Jumhuriat Hospital, National Cancer Control Program, Ministry of Public Health, Kabul, Afghanistan Jane  Phillips, BAppSc, PGDipHlthProm, PhD IMPACCT  – Improving Palliative, Aged and Chronic Care through Clinical Research and Translation – Faculty of Health, University of Technology Sydney, Sydney, NSW, Australia Sergey Postovsky, MD  Pediatric Hematology Oncology and Bone Marrow Transplantation Division, Ruth Rappaport Children’s Hospital, Rambam Health Care Campus, Haifa, Israel Richard A. Powell, BA, MA, MSc  MWAPO Health Development Group, London, UK Maryam  Rassouli, PhD, RN Cancer Research Center, Shahid Beheshti University of Medical Sciences, Tehran, Iran Daniela Respini, PhD  Associazione Mareluce Onlus, Siracusa, Italy Heather  Richardson, RGN, MHM, PhD St Christopher’s Hospice, London, UK Julia  Riley, MRCGP, FRCP, MD  Institute of Global Health Innovation, Imperial College, London, UK The Royal Marsden and Royal Brompton Palliative Care Service, The Royal Marsden NHS Foundation Trust, London, UK Silvia  Rivas, MD Palliative Care Program, National Unit of Pediatric Oncology, Guatemala, Guatemala Damiano  Rizzi, PhD Department of Psychology, Soleterre Foundation – Policlinico San Matteo, Pavia, Italy Fabrizio  Romano, MD Medical Oncology Unit, Umberto I Hospital  – RAO, Siracusa, Italy David Rudilla, PhD  Pneumology, La Princesa University Hospital, Madrid, Spain Air Liquide Healthcare, Madrid, Spain Suleiman Al Sabei, RN, PhD  College of Nursing, Sultan Qaboos University, Muscat, Oman Nasreen  Muhammad  Saleem, MD Section of Palliative Medicine, Department of Oncology, The Aga Khan University Hospital, Karachi, Pakistan J.  Antonio  Salinas-Martin, PhD Department of Radiation Oncology, CHUSC – Hospital Universitario de La Candelaria, Santa Cruz de Tenerife, Spain Libby Sallnow, MBBS, MRCP, PhD  Central and North West London NHS Foundation Trust & St Christopher’s Hospice, London, UK Tânia dos Santos Afonso, RN, MSc, MNurs, PhD  Universidade Católica Portuguesa, Institute of Health Sciences, Centre for Interdisciplinary Research in Health (CIIS), Portuguese Observatory for Palliative Care, Lisbon, Portugal

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Hospital Palliative Care Support Team – Hospital Professor Doutor Fernando Fonseca, Lisbon, Portugal Aurelio Saraceno, PhD  Azienda Sanitaria di Siracusa, Siracusa, Italy Ana Sofia Simões, RN, MSc  Universidade Católica Portuguesa, Institute of Health Sciences, Centre for Interdisciplinary Research in Health (CIIS), Portuguese Observatory for Palliative Care, Lisbon, Portugal Home Palliative Care Team & Hospital Palliative Care Support Team  – Instituto Português de Oncologia de Lisboa, Francisco Gentil, Lisbon, Portugal Henry  R.  Sofyan, MD Department of Neurology Cipto Mangunkusumo General Hospital, Faculty of Medicine Universitas Indonesia, Jakarta, Indonesia Arva Paramaniaga, Jakarta, Indonesia Zemilson Bastos Brandão Souza, MD  Department of Oncology, Palliative Care and Pain Management, ACSC-HSJ/UNACON-Ministry of Health, Rio de Janeiro, Brazil Scharlotte  Spencer, DNP, APRN FNP-C ACHPN Memorial Hermann Healthcare System, Chamberlain College of Nursing, Humble, TX, USA Adam Sterman, MD, FAAP  Department of Pain Medicine, Palliative Care and Integrative Medicine, Children’s Hospitals and Clinics of Minnesota, Minneapolis, MN, USA Christi Stewart, MD  Carilion Roanoke Memorial Hospital Palliative Care Service, Roanoke, VA, USA Virginia Tech Carilion School of Medicine, Roanoke, VA, USA Carilion Center for Healthy Aging, Roanoke, VA, USA Kyriakos  Stylianides, MD Cyprus Association of Cancer Patients and Friends (PASYKAF), and Supportive Care Unit Bank of Cyprus Oncology Center, Nicosia, Cyprus Gevorg  Tamamyan, MD, MSc, PhD The Pediatric Cancer and Blood Disorders Center of Armenia, Hematology Center after Prof. R. Yeolyan, Yerevan, Armenia Department of Pediatric Hematology and Oncology, Yerevan State Medical University, Yerevan, Armenia Lili Tang, MD  Department of Psycho-Oncology, Peking University Cancer Hospital & Institute, Beijing, China Carla  Marinho  Teves, Teves Psyc, MSc Universidade Católica Portuguesa, Institute of Health Sciences, Centre for Interdisciplinary Research in Health (CIIS), Portuguese Observatory for Palliative Care, Lisbon, Portugal Ying Pin Toh, MBBS, MRCPCH  Rachel House (Yayasan Rumah Rachel), Jakarta, Indonesia

Contributors

Contributors

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Asia Pacific Hospice Network, Singapore, Singapore Julio César de la Torre-Montero, PhD, MSN, CNS, BSN, RN Oncology Nursing Care and Palliative Care, Comillas Pontifical University, Madrid, Spain Paolo Tralongo, MD  Medical Oncology Unit, Umberto I Hospital – RAO, Siracusa, Italy Gonca  Tuncel-Oguz, MD  Palliative Care Clinic, Department of Anesthesiology, Dr. A.Y. Ankara Oncology Education & Research Hospital, University of Health Sciences, Ankara, Turkey Blaise  Uhagaze, MD, MPH Rwanda Palliative Care and Hospice Organization, Kigali, Rwanda Sandra  Urusaro, RN Partners in Health/Inshuti Mu Buzima, Kigali, Rwanda Claudia  Valenzuela, MD Pneumology, La Princesa University Hospital, Madrid, Spain Autonomous University of Madrid, Madrid, Spain Patricia  Valverde, PhD  National Unit of Pediatric Oncology, Guatemala, Guatemala Muhammad Atif Waqar, MD  Section of Palliative Medicine, Department of Oncology, The Aga Khan University Hospital, Karachi, Pakistan John K. Weru, MD  Department of Medicine, Aga Khan University Hospital, Nairobi, Kenya Myriam Weyl-Ben-Arush, MD  Pediatric Hematology Oncology and Bone Marrow Transplantation Division, Ruth Rappaport Children’s Hospital, Rambam Health Care Campus, Haifa, Israel Carolyn White, NP, MSc  Centra Health Palliative Care Service, Lynchburg, VA, USA Phyllis Whitehead, PhD, APRN/CNS, ACHPN, RN-BC  Carilion Roanoke Memorial Hospital Palliative Care Service, Roanoke, VA, USA Virginia Tech Carilion School of Medicine, Roanoke, VA, USA Basma Al-Yazidi, RN, PhD  College of Nursing, Sultan Qaboos University, Muscat, Oman

Part I North America: USA

The Role of the Palliative Care Team in Keeping Pediatric Oncology Patients at Home Theresa Huntley and Adam Sterman

Epidemiology of Pediatric Oncology The incidence of pediatric cancers (age 0–19) has been relatively stable over the past 40 years. As of 2016, there are 19.3 new cases of childhood cancer per 100,000 children per year in the United States. The most common childhood cancers in descending order are central nervous system (CNS) neoplasms (including benign brain tumors), leukemia, lymphomas, soft tissue sarcomas, germ cell and gonadal neoplasms, thyroid carcinomas, malignant bone tumors, neuroblastomas, and renal tumors. Due to advances in cancer-­ directed therapies as well as improvements in supportive care measures, the mortality rates have significantly declined. In the mid-­ 1970s, the 5-year survival for pediatric cancer was only 62%, but is currently up to 86%. The largest improvements were seen in leukemia (45% 5-year survival up to 86%) and non-­ Hodgkin’s lymphoma (45% 5-year survival up to 90%). However, cancer remains the leading cause

T. Huntley (*) Department of Oncology, Pediatric Cancer and Blood Disorders Program, Children’s Hospitals and Clinics of Minnesota, Minneapolis, MN, USA e-mail: [email protected] A. Sterman Department of Pain Medicine, Palliative Care and Integrative Medicine, Children’s Hospitals and Clinics of Minnesota, Minneapolis, MN, USA e-mail: [email protected]

of death due to a medical condition in the pediatric population, second only to deaths from accidents and other forms of violence. The most common childhood cancer-related deaths are from leukemia, CNS tumors, and bone/joint tumors [16].

 roader Aspects of Pediatric B Palliative Care “Palliative care” refers to the active total care of a patient’s body, mind, and spirit and therefore strongly complements the whole patient’s psychosocial care. Historically, the term referred to care specifically directed to patients at the end of life. The current definition is more holistic, beginning when illness is diagnosed and continuing regardless of whether or not the child is receiving disease-directed therapy [14, 21]. Palliative care has the potential now to be flexible and inclusive, allowing the care to be patientcentered and family-focused, meeting the patient literally and figuratively where they are. The changing perception from end of life to care along the continuum provides access to patients and families most in need. Children with complex and/or life-limiting illness can be engaged without requiring anyone – clinicians, patients or families – to discuss a potential dying process, change a code status to DNR, or give up access to life-prolonging therapy [10]. Pediatric palliative

© Springer Nature Switzerland AG 2021 M. Silbermann (ed.), Palliative Care for Chronic Cancer Patients in the Community, https://doi.org/10.1007/978-3-030-54526-0_1

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4

care (PPC) has emerged as both an approach and a medical subspecialty focused on improving the quality of life of individuals and families facing challenges associated with life-threatening illness through prevention and relief of suffering [14]. This expertise and philosophy is increasingly being incorporated into standard oncology care for both adults and kids. It is appropriate at any age and at any point in a serious illness and can be delivered together with curative treatment [3].

The Interdisciplinary Team For a group of people to become a team, they must share a common purpose, be strongly committed to the achievement of specific tasks, and value teamwork through which they expect to accomplish more by their cooperation [12]. A fully staffed Palliative Care Consultation Team (PCCT), at minimum, comprises a physician, an advanced practice nurse, a master’s prepared social worker, and a chaplain. Other members of the PCCT ideally include child life specialists, psychologists, nurse care coordinators, home care nurses, integrative medicine practitioners, pharmacologists, rehab therapists, expressive therapists (music/art therapists), and bereavement specialists. All bring experience in palliative care, share an appreciation for collaboration, and approach their colleagues with humility and respect for each discipline’s expertise. This expertise includes excellent communication and interpersonal skills, which brings a biopsychosocial-­spiritual approach to the care. At the center of the team’s evolving plan are the patient, the patient’s family, and their values, beliefs, and needs [10]. The PCCT functions differently from the traditional multidisciplinary healthcare team. In medical care, teams are described as existing along a continuum from unidisciplinary (several members within a single discipline), multidisciplinary (a reactive model with ad hoc membership that uses a consultative format), to interdisciplinary (members are identified as working together proactively, often without

T. Huntley and A. Sterman

shared leadership and decision-making authority), to transdisciplinary (in which members create a shared team mission, benefit from role overlap, and have integrated responsibilities, training, and leadership.) [17]. In a tertiary acute care teaching hospital, teams tend to be primarily interdisciplinary, as are many palliative care teams. The PCCT often functions somewhere between interdisciplinary and transdisciplinary structures, possibly flowing back and forth depending on the task at hand, and the membership and stage of development of the team [17]. In contrast to most interdisciplinary and multidisciplinary medical team models, members of a transdisciplinary palliative care team represent their own discipline as well as the team itself. A well-functioning team can divide the workload when necessary to ensure all patients/families are seen and referrals responded to in a timely manner [17].

Symptom Management Children with cancer, especially during the last months of life, have been reported to suffer from a number of different symptoms [18, 19]. These symptoms can be managed by the PPCT, hopefully leading to more time spent at home and out of the hospital. The top three symptoms leading to suffering are discussed below. In addition to physical symptoms, they suffer from psychosocial issues such as anxiety, depression, and social isolation. They also suffer from existential distress, even young children. Pain is one of the most distressing symptoms experienced by pediatric oncology patients. Children of all ages are able to experience pain, which is most appropriately managed by a multimodal approach [13]. Non-pharmacologic modalities should be universally utilized in conjunction with medications. Data support the use of many integrative therapies including progressive muscle relaxation, hypnosis, acupuncture, massage, healing touch, and music therapy [1]. The route of administration and formulation of the medica-

The Role of the Palliative Care Team in Keeping Pediatric Oncology Patients at Home

tion is important to take into account; for example, young children would find it more difficult to swallow pills. When choosing from pharmacological therapies, one should start

5

with non-opioid basic analgesia in order to minimize opioid-induced side effects (Table 1). However, opioids remain the pillar of cancer pain management (Table  2). A way to safely

Table 1  Basic analgesia for children older than 6 months Medication (route of administration) Pediatric dose Acetaminophen/Paracetamol 10–15 mg/kg Acetaminophen/ Paracetamol (PO/ PR) Acetaminophen/ Paracetamol (IV)

2 years (13 years (>50 kg) = 1000 mg Non-steroidal anti-inflammatory drugs (NSAIDs) Ibuprofen (PO) 5–10 mg/kg

Maximal dose

Dosing interval Q6h

6–24 months = 60 mg/ kg/day > 2 years: 90 mg/kg/ day [max. 650 mg Q6h] 30 mg/kg/day

Q6h

60 mg/kg/day 75 mg/kg/day 4000 mg/day

Q6h Q6h Q6h

Q6h Q6h

Ibuprofen-Sodium (PO) 256 mg tablet = 200 mg ibuprofen

5 (-10) mg/kg

400–600 mg/dose (2400 mg/day) 200–(400) mg/dose

Ketorolac (IV)

6–24 months = 0.25 mg/kg

30 mg/dose

Q6h

>2 years = 0.5 mg/kg

30 mg/dose

Q6h

5–6 mg/kg

250–375 mg/dose

Q12h

1–2 mg/kg

100 mg

Q12–24 hours

Naproxen (PO) COX-2 inhibitor Celecoxib (PO)

Comment

Due to high cost, ONLY if enteral rectal or oral administration contraindicated; re-evaluate daily

Fast-­acting compared to regular ibuprofen: onset after 10 minutes, lasts longer, and only half dose required Recommend dosing no longer than 5 days Recommend dosing no longer than 5 days

If classic NSAIDs contraindicated; safety and efficacy has been established only in children 2 years of age or older and for a maximum of 6 months of treatment in JRA

Friedrichsdorf S, 11th Annual Pediatric Pain Master Class, Minneapolis, MN (June 2018): With Permission IV intravenous, PO by mouth (or enterally via gastric/jejunal tube), PR rectally, Q6h every 6 hours, Q8h every 8 hours, Q12h every 12 hours, Q12–24h every 12–24 hours

T. Huntley and A. Sterman

6 Table 2  Opioid starting doses for children with acute pain older than 6 months Medication (route of administration) Pediatric dose Maximal dose Partial μ-receptor agonists (“weak opioid”) 25–50 mg (max. Tramadol (PO, 0.5–1 mg/kg/ SL, PR) dose (max 2 mg/ 100 mg)/dose kg/dose) Full μ-receptor agonists (“strong opioids”) Morphine (PO, 0.15–0.3 mg/kg 7.5–15 mg/dose SL, PR) Morphine (IV, 0.05–0.1 mg/kg 2.5–5 mg/dose SC) Oxycodone (PO, 0.15–0.3 mg/kg 7.5–15 mg/dose SL, PR)

Fentanyl (IV, SC, SL, transdermal, buccal)

0.5–1 mcg/kg

25–50 mcg

Hydromorphone 40–60 mcg/kg 2000–3000 mcg (= (PO, SL, PR) 2–3 mg) Hydromorphone 10–20 mcg/kg 0.5–1 mg (IV, SC) Multi-mechanistic full μ-receptor agonists (“strong opioid”) Methadone (PO, 0.05–0.1 mg/kg 2.5–5 mg PR, SL)

Methadone (IV, SC)

0.04–0.08 mg/kg

2–4 mg

Dosing interval Q4–6h

Comment Analgesic ceiling effect: max. 8 mg/kg/ day (>50 kg: max. of 400 mg/day)

Q4h Q4h Q6h

n/a

Oxycodone can be administered every 6 hours due to longer half-life; alternatively may be given every 4 hours: 0.1–0.2 mg/kg Q4h (max. 5–10 mg Q4h) Due to short half-life, consider starting continuous infusion 0.5–1 mcg/kg/hour (max. 50 mcg/hour), if scheduled analgesia required

Q4h Q4h

Q8–12h

Q8–12h

Methadone should not be prescribed by those unfamiliar with its use! Its effects should be closely monitored for several days, particularly when it is first started and after any dose changes Whereas in pediatrics due to high bioavailability about 80% of the enteral dose appears to be the equianalgesic IV dose (e.g., 1 mg PO = 0.8 mg IV), adult recommendations suggest 50% conversion (e.g., 1 mg PO = 0.5 mg IV)

Friedrichsdorf S, 11th Annual Pediatric Pain Master Class, Minneapolis, MN (June 2018): With Permission Dosing range: Younger children with smaller pain start on the lower end of the range, older children with severe pain start on the higher end of the dosing range; doses will then be titrated to effect Maximum per kg dose capped at 50 kg body weight For strong opioids: Rescue (“breakthrough” or “PRN”) dose = 10% of total daily dose IV intravenous, PO by mouth (or enterally via gastric/jejunal tube), SL sublingual, PR rectally, Q4h every 4 hours, Q6h every 6 hours, mg milligram, mcg microgram

administer opioids, when necessary, is via a patient-controlled analgesia (PCA) (Table  3). PCAs are pumps that can administer medications at a continuous rate, as well as deliver an additional bolus dose of the medication. The bolus is activated by a nurse, parent, or, when old enough, usually age 6 or 7, by the patient. Adjuvant analgesia can be added for opioidsparing intent or for difficult to control pain, like in neuropathic pain (Table 4). For neonates

and infants, medication doses must be adjusted due to their immature metabolism (Table 5). Cancer-related fatigue is one of the most common symptoms reported in the pediatric population. The cause is multifactorial including anemia, poorly controlled symptoms, side effects from medications, cancer-directed therapies, and deconditioning. Management should include adequate control of symptoms, exercise/physical therapy, and medications when appropriate, with

The Role of the Palliative Care Team in Keeping Pediatric Oncology Patients at Home

7

Table 3  Starting doses for patient (or nurse)-controlled analgesia (PCA) pumps for children in acute pain older than 6 months

PCA dose Morphine 10–20 mcg/kg

Max. continuous Max. PCA dose (for patients Continuous infusion infusion (for patients >50 kg) >50 kg) (basal rate) 500–1000 mcg (= 0.5–1 mg)

Fentanyl 0.5–1 mcg/kg 25–50 mcg Hydromorphone 2–4 mcg/kg 100–200 mcg

Number of max. Lock-­out time boluses

10–20 mcg/kg/ hour

500–1000 mcg (= 0.5–1 mg)/hour

5–10 minutes

4–6 boluses/hour

0.5–1 mcg/kg/hour

25–50 mcg/hour

5–10 minutes

4–6 boluses/hour

2–4 mcg/kg/hour

100–200 mcg/h

5–10 minutes

4–6 boluses/hour

Friedrichsdorf S, 11th Annual Pediatric Pain Master Class, Minneapolis, MN (June 2018): With Permission Dosing range: Younger children with smaller pain start on the lower end of the range, older children with severe pain start on the higher end of the dosing range Doses will then be titrated to effect with escalation usually in (33-) 50% increments both for continuous and PCA bolus dose PCA dose usually = continuous infusion (might differ in individual patients) Maximum per kg dose capped at 50 kg body weight Consider adding low-dose naloxone infusion 0.5–2  mcg/kg/hour (max. 25–100  mcg/hour) to treat potential opioid-­ induced side effects, such as pruritus, nausea, constipation, urinary retention, hallucinations etc. Table 4  Adjuvant analgesia for infants, children, and adolescents Medication (route of administration) Pediatric dose Gabapentinoids Gabapentin (PO) 6 mg/kg (titrated up to 24 mg/kg)

Pregabalin (PO)

1 mg/kg (titrated up to 6 mg/kg)

Alpha-agonists Dexmedetomidine 0.2 (titrate to max. (IV) 2) mcg /kg/hour Clonidine (PO, 1–3 mcg/kg transdermal) NMDA-channel blocker Low-­dose 1 mcg/kg/minute ketamine (IV) [= 60 mcg/hour] (titrated to 5 mcg/ kg/minute [= 300 mcg/hour])

Max. dose (for patients >50 kg)

Dosing interval

300 mg (titrated up to 1200 mg) TID

TID

50 mg (titrated up to 300 mg) BID

BID

10 (titrate to max. 100) mcg /hour 50–150 mcg

Continuous infusion Q4–6h

3 mg/hour (titrated to 15 mg/hour)

Continuous infusion

Comments/side effects In school children may start at lower doses to reduce risk of initial sedation Can NOT be administered rectally (missing active transporter = no absorption) Infants 50 kg)

Dosing interval

5 mg (titrated to max. 25 mg)

QHS

5 mg (titrated to max. 25 mg)

QHS

Comments/side effects Despite the name, medication NOT potent as an antidepressant Consider EKG to rule out QTc-prolongation Tertiary amine TCA; stronger anticholinergic side effects (including inducing sleep) than nortriptyline For infants >3 months Despite the name, medication NOT potent as an antidepressant Consider EKG to rule out QTc-prolongation For infants >3 months

Friedrichsdorf S, 11th Annual Pediatric Pain Master Class, Minneapolis, MN (June 2018): With Permission IV intravenous, PO by mouth (or enterally via gastric/jejunal tube), PR rectally, TID three times per day, BID twice per day, Q6h every 6 hours, Q8h every 8 hours, Q12h every 12 hours, Q12–24 h every 12–24 hours, NMDA N-methyl-Daspertate, QHS once at night Table 5  Analgesia for neonates and Infants 0–6 months of age Drug Basic analgesia Ibuprofena Acetaminophen

Acetaminophenb Opioids Morphine Morphinec

Route

Pediatric dose (age)

Maximal dose Dosing interval

PO PO, PR

5–10 mg/kg (infants 3–6 months) 5–10 mg/kg (neonates 0–30 days) 10 mg/kg (infants 1–3 months) 10–15 mg/kg (infants 3–6 months)

IV

75

107

100 80 60

48 31

40

30

21

20

20

18

14

11

8

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Palliative Care for Cancer Patients in Rural Central Africa: Experiences from Cameroon

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Table 1  Monthly activity indicators of the Bonassama District Hospital Home-Visit Program, Douala Cameroon (August 2017 to December 2019) Year Month January February March April May June July August September October November December Total

2017 Number of visited homes

Number of outings

6 12 12 10 15 55

1 2 2 2 3 10

2018 Number of visited homes 15 11 10 5 13 11 8 5 17 7 11

Number of outings 3 2 2 1 3 2 2 1 3 2 1

113

22

Table 2 Reasons for intervention (August 2017 to December 2019, Douala Cameroon) Reasons for home visit Pain + other symptoms management + psychological support Symptoms management Pain management + psychological support Psychological support Pain management End of life care Symptoms management + psychosocial support Pain management + psychosocial support Psychosocial support Total

Effective 49

% 33.56

25 21

17.12 14.39

16 15 13 3

10.95 10.27 8.9 2

2

1.36

2 146

1.36 99.91

2019 Number of visited homes 18 11 6 11 9 8 5 6 13 5 11 5 108

Number of outings 3 2 1 2 2 2 1 1 3 1 2 1 21

Table 3  Patient home visits according to the type of cancer (August 2017 to December 2019, Douala Cameroon) Type of cancer Breast Cervix Prostate Colorectal Soft tissue sarcoma Lymphoma Cutaneous Hepatocellular carcinoma Ovarian Vulvar Lung Cavum Kaposi Kidney Oesophagus Stomach Anal Brain Osteosarcoma Pancreas Carcinoma of unknown origin Gallbladder Germ cell Leukemia Multiple myeloma Salivary glands Adrenal gland Tongue Total

Effective Percentage 49 33.6 12 8.3 9 6.3 8 5.5 7 4.86 6 4.1 5 3.42 5 3.42 5 3.42 5 3.42 4 2.74 3 2 3 2 3 2 3 2 3 2 2 1.37 2 1.37 2 1.37 2 1.37 1 0.68 1 1 1 1 1 1 1 146

0.68 0.68 0.68 0.68 0.68 0.68 0.68 100

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References 1. Ambroggi M, Biasini C, Toscani I, et  al. Can early palliative care with anticancer treatment improve overall survival and patient-related outcomes in advanced lung cancer patients? A review of the literature. Support Care Cancer. 2018;26(9):2945–53. 2. International Agency for Research in Cancer. (consulted on 01/20/2020). Cameroon (online). http://gco. iarc.fr/today/data/factsheets/populations/120-cameroon-fact-sheets.pdf. 3. Ovayolu Ö, Ovayolu N, Aytaç S, Serçe S, Sevinc A.  Pain in cancer patients: pain assessment by patients and family caregivers and problems experienced by caregivers. Support Care Cancer. 2015;23(7):1857–64.

D. B. Esther Hortense Murielle and C. D’Souza 4. Plan National de développement sanitaire 2016-2020. (consulted on 01/28/2020). Ministry of Public Health (online). https://www.minsante.cm/site/?q=fr/content/plan-national-de-d%C3%A9veloppement-sanitaire-pnds-2016-2020. 5. Alamy. (consulted on 01/21/2020). Carte (online). https://www.alamyimages.fr/photo-image-l-afriquel-amerique-centrale-cameroun-carte-atlas-carte-dumonde-voyage-afrique-147038711.html 6. Merriman A, Mwebesa E, Zirimenya L.  Improving access to palliative care for patients with cancer in Africa: 25 years of Hospice Africa. Ecancermedicalscience. 2019;13:946. Available on https://doi.org/10.3332/ecancer.2019.946. 7. Enow Orock GE, Ndom P, Doh AS.  Current cancer incidence and trends in Yaounde, Cameroon. Oncol Gastroenterol Hepatol Rep. 2012;1(1):58–63.

Part XVIII Middle East: Cyprus

Collaboration Between Palliative Care and Oncology Services and Global Models of Integration Haris Charalambous, Kyriakos Stylianides, and Sophia Nestoros

Introduction According to the World Health Organization (WHO), palliative care (PC) aims to “improve the quality of life of patients and families who face life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual”. Furthermore, the WHO recommends that PC becomes an integral part of health care for all patients affected by a life-threatening disease and that these patients should have access to PC services [1]. This statement is further supported by the European Association of Palliative Care [2] and is also in agreement with the guidelines of the European Council toward the European Union (EU) Member States [3]. Furthermore, evidence has been accumulating about the benefit of integrating PC within standard oncological care for patients with advanced H. Charalambous (*) Bank of Cyprus Oncology Center, Nicosia, Cyprus e-mail: [email protected] K. Stylianides Cyprus Association of Cancer Patients and Friends (PASYKAF), and Supportive Care Unit Bank of Cyprus Oncology Center, Nicosia, Cyprus e-mail: [email protected] S. Nestoros Cyprus Anti-Cancer Society, Nicosia, Cyprus e-mail: [email protected]

or metastatic cancer resulting in improvement of patients’ quality of life, decreased rates of depression, illness understanding, patient’s satisfaction and even survival [4–7].

Progress and Limitations of the Service We Provide to Our Patients Great progress has been achieved in both oncology and palliative care (PC) in the last 20 years. In oncology, we have witnessed the establishment of multidisciplinary teams and meetings, centralization of care and new radiotherapy (RT) techniques: intensity-modulated RT, image-­ guided RT and stereotactic RT, and the revolution of molecular biology, with the emergence of targeted therapy and immunotherapy with the use of checkpoint inhibitors [8]. In PC, essentially a new specialty was set up in many countries worldwide with major steps made in capacity building leading up to integration in a few countries [8–10]. Furthermore, there has been a recognition of the important role of PC in the palliation of patients with advanced illness, while more recently evidence for the earlier integration of PC in the disease trajectory has been adopted by major oncology organizations, including the American Society of Clinical Oncology (ASCO) and the European Society of Medical Oncology (ESMO) [11, 12].

© Springer Nature Switzerland AG 2021 M. Silbermann (ed.), Palliative Care for Chronic Cancer Patients in the Community, https://doi.org/10.1007/978-3-030-54526-0_27

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For oncology providers, it is sobering to reflect that in this process of exciting molecular biology and technological achievements, the American Society of Clinical Oncology in a statement titled “Toward individualized care for patients with advanced cancer” recognized that oncology care has become synonymous with disease-directed care, often without realistic conversations about prognosis, the potential benefits and limitations of disease-directed therapy and the potential role of PC, while often neglecting to address physical, psychological and spiritual consequences of disease and its treatment [13]. For palliative care (PC) providers, there is still the challenge to convince oncology providers, health care planners and stakeholders of the potential benefit of PC and the significant problems of a limited trained workforce and limited resources dedicated to PC Services. Finally, while steps are being made toward capacity building, this is not close to meeting potential demand for these services, and this is especially a problem in developing countries [14].

 ymptom Control and Basic S Palliative Care (PC) Skills of Oncologists and Referral Patterns to Palliative Care (PC) Basic PC is provided by oncologists or primary care physicians addressing basic pain and symptom management, basic management of depression and anxiety, and basic discussion about goals, prognosis and suffering [15]. Specialist palliative care (SPC) is provided by a multidisciplinary PC team, that is, health care professionals with expertise in PC, and who are exclusively occupied in providing PC, dealing with management of refractory pain and other symptoms, complex depression, anxiety, grief and existential distress, and assistance with conflict resolution and in addressing futility issues [15]. Studies looking at the attitudes and knowledge of oncologists regarding symptom control management and providing basic palliative care suggest an obvious gap in knowledge and skills of oncologists in PC [16–21]. Two studies from the USA by Breuer [16] and Fisch [17] highlighted that US medical oncologists still lack the essen-

H. Charalambous et al.

tial experience to provide good symptom control to the most basic of physical symptoms, that of pain. Furthermore, medical oncologists rated their specialty highly for the ability to manage cancer pain but rated their peers lower than themselves, while in response to two vignettes describing challenging clinical scenarios, 60% and 87%, respectively, endorsed treatment decisions that would be considered unacceptable by pain specialists [16]. Yet despite this suboptimal cancer pain management knowledge, frequent referrals to pain or palliative care specialists were reported by only 14% and 16%, respectively [16]. Equally, the European Society of Medical Oncology (ESMO) survey identified a major discrepancy between what we as oncologists think we know or do, and what we actually know or do [18]. For instance, while 88% of European medical oncologists felt that they should co-ordinate the care of their patients for all stages of disease including end-of-life care, only 43% did so, with only 39% commonly meeting with families of dying patients and only 11.8% managing delirium (despite this being a very common symptom in patients with advanced cancer). Furthermore, while over 60% of respondents claimed to be experts in the management of physical and psychological symptoms of patients with advanced cancer, only 37% reported that most oncologists they know shared similar expertise. The problem may be even worse in recognizing and managing psychological or spiritual/existential distress symptoms. A similar survey of medical oncologists from Australia by Ward et al. [19] found that 92% oncologists felt confident in the management of physical symptoms, compared to only 61.7% for psychological symptoms and 53.9% for existential distress, while in the ESMO survey, respondents were involved more commonly in treating physical symptoms, such as pain (93%), fatigue (84%) and nausea/emesis (84%), than in managing psychological symptoms such as depression/anxiety (65%) and existential distress (29%). Finally, in a Canadian survey by Wendtland [20] and another Australian survey by Johnson [21], oncologists/cancer specialists were less likely to refer for psychosocial or spiritual problems, despite this being a domain that oncologists may have less expertise in.

Collaboration Between Palliative Care and Oncology Services and Global Models of Integration

The explanation for not referring for psychosocial or spiritual issues may relate to lack of experience in dealing with psychosocial problems along with lack of awareness about the potential of PC and multidisciplinary input to deal with these symptoms. It has been suggested that this results in “learned helplessness” and a misconception that nothing can be done about these issues [22]. On the contrary, previous experience of PC training or positive relationship/satisfaction with PC correlates with earlier referral to PC as shown in the Canadian survey by Wendtland [20]. Overall, in terms of oncologists’ PC skills, in the Canadian survey by Wendtland [20], only 42% of physicians felt comfortable to provide PC to their patients, while 58% felt the need for additional training. In the ESMO survey [18], 42% of respondents felt that they had not received adequate training in PC during their training, while in the Australian studies by Ward [19], this was 26.1% and in the Johnson study 28% [21].

 elationship of Oncology and PC R Services and Barriers to Referral to PC There are many different settings and differences worldwide, in terms of the relationship of the two specialties, that may have a significant impact as to the way the two specialties collaborate, interact and work together. For instance, if both services are based in the same locality or have the same employer, if there are regular meetings and discussion of patients between specialists of both disciplines or if there is presence of palliative care physicians in the hospital or cancer center, these are important factors resulting in a better relationship, collaboration and referral patterns to PC. To the contrary, if services are run completely parallel, with little contact between the two specialties, then patients are traditionally moved from oncology care to palliative care for end-of-life care or perhaps may never be referred to palliative care, not even for end-of-life care. There may be other issues that have an impact on the collaboration and referral patterns between the two disciplines relating to availability of PC services and PC capacity. In cases where this PC availability is very limited, this makes collaboration very difficult.

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Finally, it is important to consider that the collaboration and referral patterns to PC are influenced by significant barriers that are still present even today, including both patients’ and oncologists’ negative attitudes toward PC.  In a recent European survey of lung cancer oncologists, up to 22% held negative attitudes regarding PC [23], and this was similar to the ESMO survey carried out 10 years earlier [18]. In terms of patient attitudes, even in countries with established PC, surveys of oncologists by Ward and Wendtland [19, 20] show that the biggest barrier for referral related to negative attitudes of patients to PC. This is thought to relate to “the misconception that PC is only for patients at the end-of-life and the death-defying mentality in our society” [24].

 ow to Improve Collaboration H Between Oncology and PC Services Both disciplines serve patients with advanced or metastatic cancer. In the paragraphs above, we outlined some limitations of standard oncology care, focusing on disease-directed therapy and some evidence from surveys of oncologists suggesting that there are deficiencies in providing basic PC to patients with advanced or metastatic cancer, and the finding that oncologists require more training in PC.  Where oncology focuses on disease-directed care, PC focuses instead on patient’s symptoms and quality of life, and evidence from randomized trials suggests that the approach that combines both specialties affords the best outcomes to patients with advanced cancer [11]. Within this context, it is even more important that oncology and PC providers collaborate to provide a more holistic care to patients with advanced incurable cancer. This can help to address issues like lack of time for oncologists to deal with patients’ symptoms, lack of access to a multidisciplinary team especially useful for psychosocial and existential problems, lack of routine symptom scoring leading to underdiagnosis and undertreatment of patients’ symptoms and, finally, lack of PC training. Furthermore, this collaboration, by bringing the two disciplines closer, can also work toward changing attitudes and eliminating

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barriers of referral to PC.  We shall illustrate how collaboration can be improved between oncology and palliative care services, using the example of our own country, Cyprus, as was reported in previous publications [8, 25–27]. Cyprus is a small island in the Eastern Mediterranean with less than 1 million inhabitants. PC services are essentially provided by two non-governmental organizations (NGOs). The Cyprus Anticancer Society set up the Arodaf­ nousa hospice and a home care team in 1976, while in 1986, PASYKAF (Pancyprian Association of Cancer Patients and Friends) set up a home care service for cancer patients. In the past, and up until 10 years ago, there was little collaboration between the PC and oncology teams. There were essentially only two PC physicians for a population of just under 1 million, and they both worked for one of the NGOs. They were based at the hospice, with no presence in either the main hospitals or the main oncology center in Cyprus [8, 26, 27]. Furthermore, in Cyprus the predominant oncology practice used to be of disease-directed therapy very much until the end of life, and then referral to the hospice for end-of-life care, hence making PC synonymous with end-of-life care. As a result, patients and families used to refuse to go to the hospice, as this was considered to be the place “where you go to die” [24–27]. How did change come about? About 10 years ago in 2010–2011, following a number of PC training courses organized by the Middle East Cancer Consortium (MECC) [25] and a course run by the Institute of Palliative Medicine from San Diego involving both PC and oncology staff, it was realized that there was a need for more collaboration between the oncology and PC providers and need for increased PC input within the main tertiary oncology center in Cyprus [26, 27]. As a result, a number of initiatives were set up:

in the Oncology Center, helping both with symptom control issues and also facilitating the referral of patients to the hospice [8, 26, 27].

• Joint training initiatives including weekly lectures for both oncology and PC staff were organized at the Oncology Center, while a residential communication skills course for staff from both oncology and PC was organized with the team of Professor Leslie Fallowfield from the UK [25–27]. • A daily supportive care/PC unit/drop-in center was set up at the Oncology Center to address urgent symptom control problems for cancer patients [26, 27]. • A weekly multidisciplinary team meeting involving both oncology and PC professionals (an oncologist, PC nurses, physicians training in PC, oncology nurses, pharmacists, psychologists and a Christian Orthodox priest) was set up at the Oncology Center [25–27]. • Finally, there have been a number of joint publications between oncologists and PC physicians [24–27], while an early PC intervention trial is being planned.

• Firstly, a weekly specialist PC clinic was set up at the Oncology Center run by the two PC physicians, allowing for the referral of patients with difficult-to-control symptoms [8, 26, 27]. • On the day of the weekly PC clinic, the PC physician would also attend the daily ward-­round

Following the success of these initiatives, encouraging earlier introduction of PC in patients with advanced or metastatic cancer, in 2012, the Board of the Oncology Center decided to fund the training of two physicians from the Oncology Center to receive post-graduate/specialist training in PC in the USA [8, 26, 27]. This was fol-

How to Improve Collaboration Between PC and Onc Providers?

• Aim to bring the two specialties together • Organize training courses to be attended by both specialties • Provide increased presence of PC physicians within cancer center/hospital: –– Regular (weekly) PC clinics in the cancer center/hospital –– Review of ward patients by PC physician • Set up weekly multi-disciplinary meeting jointly attended by both specialties • Aim for joint audit/research projects and publications

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lowed by both NGOs deciding to employ one additional physician each and train them within the same program in the USA. While one of the physicians from one of the NGOs subsequently dropped out of the training, the result of this initiative was to have three extra physicians with an interest in PC in Cyprus [8, 26, 27]. All the above initiatives resulted in a more comprehensive multidisciplinary care, by earlier involvement of the appropriate members of the multidisciplinary team in order to meet the complex needs of patients with advanced cancer and to improve collaboration and communication among the oncology and PC community and hospice teams [8, 26, 27]. As a result of the various initiatives in Cyprus, there has been a gradual change in terms of attitudes of oncologists and their approach to PC, resulting in increased referrals from oncologists to PC and earlier involvement of PC teams in patients’ care in the community, evidenced by increased cancer patients receiving PC under the care of both NGOs in 2012 compared to 2010 [8, 26, 27].

dedicated palliative care services, early in the disease course, concurrent with active oncological treatment [11]. The European Society for Medical Oncology (ESMO) also strongly endorses the integration of oncology and palliative care [12] as does the American Cancer Society [33], and this is also supported by the NCCN Clinical Practice Guidelines [34]. However, there is no clear agreement on what constitutes integration, and in order to understand this better, Hui et  al. undertook a systematic review on this topic which highlighted 38 clinical, educational, research and administrative indicators [35]. From a total of 101 selected relevant publications, process indicators of integration included the:

I ntegration of PC and Oncology Care: Global Models

Similarly, in an international consensus of indicators on the integration of specialty PC and oncology programs for advanced cancer patients in hospitals with more than 100 beds, the panelists reached a consensus on 13 major and 30 minor indicators [36]. Major indicators included:

There is uniform consensus that the integration of PC into standard oncology care is beneficial to patients with advanced, incurable cancer. Randomized clinical trials on integration of oncology and palliative care [4–7], metanalyses and systematic reviews [28–31] point to significant health gains: improved symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life and improved use of health care resources. A Lancet Oncology commission suggests that the combination of patient-directed care by specialist PC teams alongside disease-directed treatment promotes patient-centered care and affords the best outcomes [32]. This is also supported by the American Society of Clinical Oncology, which recently updated its previous Provisional Clinical Opinion into a Clinical Practice Guideline Update entitled “Integration of Palliative Care into Standard Oncology Care” advocating that patients with advanced cancer should receive

• presence of interdisciplinary PC teams (n = 72), • simultaneous care approach (n = 71), • PC guidelines (n = 33), • routine symptom screening (n = 25), • care pathways (n = 11), and, • combined tumor boards (n = 10)

• Two (2) related to structure (consensus 95–98%), namely the presence of PC inpatient consultation team and outpatient clinics • Four (4) on processes (88–98%): interdisciplinary team, routine symptom screening, ­routine documentation of advance care planning and early referral • Three (3) on outcomes (88–91%): two on quality of end-of-life care relating to assessment of pain before death and emergency room visits during the last 30  days of life, and place of death consistent with patient’s preference • Four (4) on education (93–100%): oncology fellows to have PC training, continuing medical education for oncologists, combined PC and oncology educational activities for fellows and oncology fellows to have routine rotations in PC.

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In 2003, the European Society for Medical Oncology (ESMO) started a process of accreditation for centers displaying integration of oncology and PC, resulting in an award of the status “Designated Centre of Integrated Oncology and Palliative Care” (ESMO-DC) using a list of 13 qualitative criteria related to program infrastructure, clinical processes, education and research [12] with over 200 institutions around the world having been accredited so far [37]. It is worth pointing out that this list of 13 criteria is different from the indicators on integration from the international consensus group [36]. The list of the ESMO criteria compared to the international consensus of indicators on integration of specialty PC and oncology programs can be seen in Table 1. Due to studies of early PC driving the agenda for integration of PC into standard oncology care, great attention has been dedicated to the timing of referral to PC. Firstly, it is worth pointing out that in the international consensus of indicators on integration of specialty PC and oncology study, only half of the panelists agreed with using the 1–3 months from advanced cancer diagnosis as a cutoff for early PC referral, and in the end, this was defined as median time from referral to death >6 months before death [36]; see Table 1, item 5. Furthermore, the question of the timing of the referral of advanced cancer patients to PC was looked at in a Delphi consensus of 60 international experts, with most experts considering that >24  months to be too early, and identified the optimal timing as prognosis of 6–24 months [38]. It was also thought that the ideal timing for referral should be within 3  months of diagnosis of advanced cancer, if patients had a median survival of ≤1  year, had progressed through at least one line of systemic therapy and had Eastern Cooperative Oncology Group (ECOG) performance status ≥2 [38]. This reflects the concern that patients with metastatic disease for some cancers may have a median survival of several years, and for those patients, “the exact timing of ‘early’ PC may be a factor of need rather than any specific time point from diagnosis” [36]. Furthermore, it is worth pointing out that even within ESMOdesignated centers of integrated Oncology and Palliative Care (ESMO-DC) and in a recent study

in 2018, only 20% met the criterion for early referral to PC, with a median time from referral to death defined as >6 months before death [37]. Table 1  Criteria for ESMO-designated center and indicators of integrationa Criteria for accreditation as ESMO-designated center in integrated oncology and palliative care 1. The center is a cancer center which provides closely integrated oncology and palliative care clinical services 2. The center is committed to a philosophy of continuity of care and non-abandonment 3. The center incorporates expert medical and nursing care in the evaluation and relief of pain and other physical symptoms 4. The center incorporates expert care in the evaluation and relief of psychological and existential distress 5. The center provides routine patient assessment of physical and psychological symptoms and social supports and has an infrastructure that responds with appropriate interventions in a timely manner 6. The center provides emergency care of inadequately relieved physical and psychological symptoms 7. The center provides facilities and expert care for inpatient symptom stabilization 8. The center incorporates programmatic support of family members

9. The center provides high-level home care with expert back-up and coordination of home care with primary cancer clinicians 10. The center provides respite care for ambulatory patients for patients unable to cope at home or in cases of family fatigue

Indicators of integration 1. Presence of palliative care inpatient consultation team 2. Presence of palliative care outpatient clinic 3. Presence of interdisciplinary palliative care team 4. Routine symptoms screening

5. Early referral to palliative care (>6 months)

6. Proportion of routine documentation of advance care plan, median (IQR) 7. Proportion of outpatients with pain assessed before death, median (IQR) 8. Proportion of patients with two or more emergency room visits in last 30 days of life, median (IQR) 9. Proportion of place of death consistent with patient’s preference, median (IQR) 10. Didactic palliative care curriculum

Collaboration Between Palliative Care and Oncology Services and Global Models of Integration Table 1 (continued) Criteria for accreditation as ESMO-designated center in integrated oncology and palliative care 11. The center provides facilities and expert care for inpatient end-of-life (terminal) care and is committed to providing adequate relief of suffering for dying patients 12. The center participates in basic or clinical research related to palliative care and the quality of life of patients with cancer and their families 13. The center is involved in clinician education to improve the integration of oncology and palliative care

Indicators of integration 11. Continuing education in palliative care

12. Combined palliative care and oncology educational activities 13. Routine rotation in palliative care for oncology fellows

From Hui et al. [37]

a

Beyond indicators, integration between oncology and palliative care has been described in the following three levels or stages [39, 40]: (a) Linkage: where oncologists just refer to PC (b) Coordination: where there are established processes and pathways of interaction and pre-defined criteria for referrals (c) Full integration: where there are pooled resources between oncology and palliative care While the ideal level of integration may vary based on the individual health care system, resources, for example, PC workforce, and extent of PC provided by oncologists [39], it is desirable to aim to have either coordination or full integration, as this would avoid the scenario of very late referral to PC at the end of life and would thus provide more comprehensive care and allow for earlier input from specialized PC services in the disease trajectory. Useful, especially for health care planners, is the study by Hui and Bruera [39], who describe conceptual models of integration between oncology and palliative care primarily to discuss the timing, selection of patients and criteria used to refer patients between oncology and palliative care. They describe four conceptual models:

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(a) Time-based model: which uses chronological criteria in the disease trajectory for the referral/introduction of PC to cancer patients, for example, at the time of diagnosis of advanced disease or for end-of-life, the emphasis being on the timing of integration. (b) Provider-based model: whereby oncologists and primary care physicians provide basic palliative care and specialized PC teams provide specialized PC.  Hence, patients with more complex needs would need to be referred to PC. (c) Issue-based model: which is focused on the individual symptoms and problems that patients have, and how those are being managed. Those can be managed as follows: (i) By the oncologist alone (the solo practice model). (ii) By the oncologist referring to various specialists (e.g. pain clinic and psychology); this is referred to as the congress model. (iii) By the oncologist referring to specialized PC, which is called the integrated model. The integrated model is ­recommended because it provides early concurrent PC with oncology care. (iv) System-based model: automatic referral based on predefined criteria (for instance, the National Comprehensive Cancer Network has issued guidelines for palliative care referral).

Global Level of PC Development

Level 1: No known hospice PC activity Level 2: Capacity-building activity Level 3a: Isolated PC provision Level 3b: Generalized PC provision Level 4a: Preliminary integration into mainstream service provision Level 4b: Advanced integration into mainstream service provision [9].

Whichever model or indicators we consider for integration, of paramount importance is the level of PC services available; in order to be able to integrate PC into oncology care, there is a

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need for adequate PC services to be in place. In a 2013 report by the WHO and Worldwide Hospice Palliative Care Alliance (WHPCA), the global level of PC development was rated between 1 and 4 [9]. Based on this classification, the only countries that reached advanced integration were developed countries in Western Europe, North America, Australia and Japan, while all other countries had lower levels of PC development [9, 41]. Even in countries that have reached “advanced integration”, there is evidence of large regional variation in PC provision [41]. A study of cancer centers in the USA showed that inpatient consultation teams, outpatient palliative care clinics, acute palliative care units and institution-run hospices were present in 92%, 59%, 26% and 31% of National Cancer Institute (NCI)-designated cancer centers, and 56%, 22%, 20% and 42% of non-NCI-designated cancer centers, respectively, while fewer than half of the cancer centers had PC fellowship training and research programs in place [42].

Collaboration and Integration: In Practice There is now general agreement on the need for integration of PC with standard oncology care, hence “the question is no longer whether PC care should be offered, but what is the optimal model of delivery, when is the ideal time to refer, who is in greatest need of a referral, and how much palliative care should oncologists themselves be providing” [43]. Answers to these questions may differ for different countries and for different levels of PC development. Furthermore, it is worth considering that recommendations and indicators for integration have been produced from providers in PC resource-rich countries, and those may not apply to the majority of countries worldwide, where there is a huge shortage of PC specialist physicians and nurses [44]. It has furthermore been suggested that, given the differences in the availability of services, there is no “one-size-fits-­all” approach that would work for every country, and instead we should be looking at solutions tailored to the individual centers’/countries’ PC resources [44].

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Hence in PC-rich settings, it is imperative that integration of PC into standard oncology care takes place early, perhaps at the time of diagnosis of advanced or metastatic disease, and certainly at a prognosis of greater than 6 months, and the indicators described before would provide standards against which this can be measured. For PC-poor settings though, where integration of the type described before is not possible, collaboration between the two specialties (starting with joint training courses and combined meetings and clinics, as shown by the example of our own country, Cyprus) can improve care and, over time, bring integration. Furthermore, collaboration between the two specialties can help to motivate oncology junior staff to train in PC, as happened in Cyprus, providing valuable physician workforce in PC in the long term and can also improve on the barriers of referral to PC. Moreover, the outcome resulting from a more efficient use of resources and the potential cost savings from PC services is unlikely to go unnoticed and may help convince health care planners and administrators to provide more resources to PC and allow, over time, PC capacity building. We suggest that this progress of collaboration leading to integration can start even with a few PC physicians and nurses and a few oncologists. To the oncologists and PC physicians that would like to replicate the initiatives undertaken in Cyprus, we suggest that you form alliances with other health care professionals (oncologists and palliative care physicians and nurses) where you work, who share the same values as you about providing patient-centered care and concurrent oncology with PC [8]. When setting up common training courses for oncology and PC staff, help from other PC organizations from other countries may be needed [8, 45]. It is important that other physicians/surgeons and patients’ negative attitudes and misconceptions toward PC are addressed, while cultural norms in the individual countries are respected [8, 46]. From joint training initiatives, the next step is to set up initiatives with clinical sessions, bringing the two disciplines together, as described with Cyprus (i.e. the importance of the physical presence of PC physicians within cancer centers or hospitals with oncology units as well as joint meetings).

Collaboration Between Palliative Care and Oncology Services and Global Models of Integration

Furthermore in PC-poor settings, we propose, depending on available PC capacity, a more flexible transition and a more targeted concurrent model of oncology and PC, where referral to specialized PC (SPC) should be tailored to patients with more complicated palliative care needs that cannot be met by their primary care physician or oncologist, that is, a way of rationing SPC services, until such time that there is adequate PC capacity to cope with the demand. Even colleagues from advanced health care systems in the USA and Canada propose that PC should be Targeted, Timely and Team based [43]. They describe “targeted PC that involves identifying patients most likely to benefit from specialist PC interventions, akin to the concept of targeted cancer therapies” and timely PC from the time of diagnosis of advanced incurable cancer as “preventative care to minimize crises at the end of life” [43]. In summary, we suggest that especially in PC-poor settings, the timing of referral should be dictated by available PC recourses and clinical need (patients having complex symptoms requiring SPC services) and ideally decided by a multidisciplinary board of oncology and PC professionals, rather than automatically at the time of diagnosis of advanced incurable cancer; this should be the aim of all countries with advanced PC services. Hence if, in your own country, you can set up a meeting whereby patients are being discussed, the patients more in need and more likely to benefit from specialist PC would be referred for PC input. Finally, both in PC-rich and also in PC-poor resource settings, in addition to online and other methods of teaching, it is vital to provide more clinically based PC training to oncologists and oncology trainees [47], so that they can provide high-quality basic PC to their patients. In line with the specification for Oncology trainees for a dedicated clinical rotation in PC in the Global Core Curriculum for Oncology Training set by ASCO and ESMO, the aim is to acquire these valuable PC and communication skills as well as the understanding of when patients should be referred to specialist PC [48]. The closer collaboration and interaction among oncologists with PC physicians and nurses within cancer centers and hospitals can only further this goal.

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314 16. Breuer B, Fleishman SB, Cruciani RA, et  al. Medical oncologists’ attitudes and practice in cancer pain management: a national survey. J Clin Oncol. 2011;29:4769–75. 17. Fisch MJ, Lee J-W, Weiss M, et al. Prospective, observational study of pain and analgesic prescribing in medical oncology outpatients with breast, colorectal, lung, or prostate cancer. J Clin Oncol. 2012;30:1980–8. 18. Cherny NI, Catane R, European Society of Medical Oncology Taskforce on Palliative and Supportive Care. Attitudes of medical oncologists toward palliative care for patients with advanced and incurable cancer: report on a survey by the European Society of Medical Oncology Taskforce on Palliative and Supportive Care. Cancer. 2003;98(11):2502–10. 19. Ward AM, Agar M, Koczwara B.  Collaborating or co-existing: a survey of attitudes of medical oncologists toward specialist palliative care. Palliat Med. 2009;23(8):698–707. 20. Wentlandt K, Krzyzanowska MK, Swami N, et  al. Referral practices of oncologists to specialized palliative care. J Clin Oncol. 2012;30:4380–6. https://doi. org/10.1200/JCO.2012.44.0248. 21. Johnson CE, Girgis A, Paul CL.  Cancer specialists’ palliative care referral practices and perceptions: results of a national survey. Palliat Med. 2008;22:51–7. 22. Abrahm JL.  Integrating palliative care into comprehensive cancer care. J Natl Compr Cancer Netw. 2012;10(10):1192–8. 23. Charalambous H, Pallis A, Hasan B, O’Brien M. Attitudes and referral patterns of lung cancer specialists in Europe to Specialized Palliative Care (SPC) and the practice of Early Palliative Care (EPC). BMC Palliat Care. 2014;13(1):59. 24. Hui D, Finlay E, Buss MK, et  al. Palliative oncologists: specialists in the science and art of patient care. J Clin Oncol. 2015;33:2314–7. 25. Silbermann M, Arnaout M, Daher M, et al. Palliative cancer care in Middle Eastern countries: accomplishments and challenges. Ann Oncol. 2012;3:15–28. 26. Charalambous H, Pitsillide B, Nestoros S.  Palliative care in Cyprus: current status. In: Silbermann M, editor. Palliative care to the cancer patient. The Middle East as a model for emerging countries. New  York: Nova Publishers; 2014. p. 1–21. 27. Silbermann M, Pitsillides B, Al-Alfi N, et  al. Multidisciplinary care team for cancer patients and its implementation in several Middle Eastern countries. Ann Oncol. 2013;24:41–7. 28. Kavalieratos D, Corbelli J, Zhang D, et al. Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis. JAMA. 2016;316(20):2104–14. 29. Gaertner J, Siemens W, Meerpohl JJ, et al. Effect of specialist palliative care services on quality of life in adults with advanced incurable illness in hospital, hospice, or community settings: systematic review and meta-analysis. BMJ. 2017;357:j2925. 30. Haun MW, Estel S, Rucker G, et  al. Early palliative care for adults with advanced cancer. Cochrane Database Syst Rev. 2017;6:CD011129. 31. Kassianos AP, Ioannou M, Koutsantoni M, Charalambous H. The impact of specialized palliative

H. Charalambous et al. care on cancer patients’ health-related quality of life: a systematic review and meta-analysis. Support Care Cancer. 2018;26:61–79. 32. Kaasa S, Loge JH, Aapro M, et  al. Integration of oncology and palliative care: a Lancet Oncology Commission. Lancet Oncol. 2018;19(11):e588–653. 33. https://www.cancer.org/treatment/treatments-andside-effects/palliative-care.html. Accessed 14 April 2020. 34. Levy MH, Smith T, Alvarez-Perez A, Back A, Baker JN, Beck A, et al. NCCN clinical practice guidelines in oncology. Palliative Care. Available from URL: http://www.nccn.org/professionals/physician_gls/f_ guidelines. Accessed 14 April 2020. 35. Hui D, Kim YJ, Park JC, et al. Integration of oncology and palliative care: a systematic review. Oncologist. 2015;20(1):77–83. 36. Hui D, Bansal S, Strasser F, et al. Indicators of integration of oncology and palliative care programs: an international consensus. Ann Oncol. 2015;26(9): 1953–9. 37. Hui D, Cherny NI, Wu J, Liu D, Latino NJ, Strasser F. Indicators of integration at ESMO designated centres of integrated oncology and palliative care. ESMO Open. 2018;3(5):e000372. 38. Hui D, Masanori M, Watanabe S, Caraceni A, Strasser F, Saarto T, et al. Referral criteria for outpatient specialty palliative cancer care: an international consensus. Lancet Oncol. 2016;17(12):e552–9. 39. Hui D, Bruera E. Models of integration of oncology and palliative care. Ann Palliat Med. 2015;4(3):89–98. 40. Leutz WN.  Five laws for integrating medical and social services: lessons from the United States and the United Kingdom. Milbank Q. 1999;77:77–100. 41. Hui D, Bruera E.  Integrating palliative care into the trajectory of cancer care. Nat Rev Clin Oncol. 2016;13(3):159–71. https://doi.org/10.1038/ nrclinonc.2015.201. 42. Hui D, et al. Availability and integration of palliative care at US cancer centers. JAMA. 2010;303:1054–61. 43. Hui D, Hannon BL, Zimmermann C, Bruera E.  Improving patient and caregiver outcomes in oncology: team-based, timely, and targeted palliative care. CA Cancer J Clin. 2018;68(5):356–76. 44. Verna L, Giusti R, Marchetti P, et  al. Integration between oncology and palliative care: does one size fit all? Ann Oncol. 2016;27(3):549. https://doi. org/10.1093/annonco/mdv582. 45. Pantilat SZ, Kerr KM, Kutner JS, et  al. Leveraging external resources to grow and sustain your palliative care program: a call to action. J Palliat Med. 2012;15(1):25–8. 46. Silbermann M, Epner DE, Charalambous H, et  al. Promoting new approaches for cancer care in the Middle East. Ann Oncol. 2013;24(Suppl 7):vii5–10. 47. Charalambous H, Silbermann M.  Clinically based palliative care training is needed urgently for all oncologists. J Clin Oncol. 2012;30(32):4042–3. 48. Dittrich C, Kosty M, Jezdic S, et  al. ESMO/ASCO recommendations for a global curriculum in medical oncology edition 2016. ESMO Open. 2016;1:e000097. https://doi.org/10.1136/esmoopen-2016-000097.

Part XIX Middle East: Iran

The Role of the Nurse in the Community in Running the Palliative Care Interdisciplinary Team: The Iranian Experience Maryam Rassouli, Leila Khanali Mojen, Azam Shirinabadi Farahani, and Samira Beiranvand

Introduction The global health system has undergone many changes in the past 20 years [1–4] and has encouraged countries to develop new models for primary health care provision [5]. One of the most important factors that have made health care reform inevitable is the increasing costs of this sector [6]. Changing lifestyles have led to increased life expectancy and subsequently the increased incidence and prevalence of non-­communicable diseases (NCD), which in turn increases the need for health care and services [6–13]. NCDs are now

M. Rassouli (*) Cancer Research Center, Shahid Beheshti University of Medical Sciences, Tehran, Iran L. Khanali Mojen Medical-Surgical Nursing Department, School of Nursing & Midwifery, Shahid Beheshti University of Medical Sciences, Tehran, Iran A. Shirinabadi Farahani Pediatric Nursing Department, School of Nursing & Midwifery, Shahid Beheshti University of Medical Sciences, Tehran, Iran S. Beiranvand Department of Nursing, Student Research Committee, School of Nursing and Midwifery, Ahvaz Jundishapur University of Medical Sciences, Ahvaz, Iran

considered a threat to the health and longevity of people in developed and developing countries [14, 15]. More than 76% of disease burden in Iran is associated with these diseases. The increasing prevalence of these diseases and their chronic, progressive and disabling nature puts the productive force of societies in danger of death, disability and incapacitation. Due to the costs of long-term treatment and high out-of-pocket expenses, these diseases can lead to heavy costs of health care and, subsequently, poverty. Therefore, NCDs are among the major barriers to the development of countries, and the high costs of these diseases bring up many challenges for any health systems [16]. In 2013, the World Health Organization (WHO) introduced the Global Action Plan (2013–2020) to the world, which included 9 goals and 25 indicators to control 4 major NCDs including cardiovascular disease, diabetes, cancer and respiratory diseases, and also to reduce the four risk factors of smoking, inactivity, poor diet and alcohol abuse, and recommended practical measures that can help countries all around the world accomplish these goals. Going by the motto “PHC- Now More Than Ever”, the most important goal of this organization was to implement PHC in order to prevent and control these diseases. To this end, PHC should be reoriented appropriately [16].

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WHO’s essential intervention package for NCDs in PHC is a set of prioritized effective interventions that can be provided with an acceptable quality, leading to the improvement of health system. The current programs integrated into PHC only focus on one risk factor such as high blood pressure or diabetes, but the integrated look into risk factors and diseases, and the integrated prevention and treatment of them result in accomplishing goals at lower costs, with higher effectiveness. Influential approaches to reducing the burden of NCDs included a combination of community-level interventions and individual interventions. Such low-cost and highly-effective interventions are currently available and include the detection and early diagnosis of NCDs using inexpensive technologies, pharmacological and non-pharmacological approaches to removing the risk factors in NCDs and available medicines for preventing and treating myocardial infarction, stroke, diabetes, cancer and asthma. If these interventions are effectively applicable through inexpensive technology and in the form of PHC, they can lead to reduced medical costs and improved quality of life and productivity in people [16]. As the health systems expand, the importance of PHC as the basis of an efficient health system becomes more apparent. Since all members of society must be able to use the health system’s full capacity fairly, the implementation of PHC strategies can play a key role in the health system at local, national and international levels [17, 18], and it continues to be a key strategy for promoting justice in health care [19]. Since 2010, universal health coverage has been widely accepted worldwide and is now recognized as one of the major components of Sustainable Developmental Goals, and governments are obliged to implement it [20]. Universal health coverage means having access to a variety of nationally approved health services (including health promotion, prevention, and health care, rehabilitation and palliative care services) whenever necessary, with appropriate quality and financial support. Iran has a long history of implementing interventions to achieve universal health coverage [3]. Since 1973, about 5  years before the international Declaration of Alma-Ata, Iran has been taking actions in the field of PHC

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provision, which are considered as successful programs and experiences in achieving universal health coverage [21]. One of the strategies for managing and providing services to NCD patients is the intersectoral cooperation (hospitals and community health centers) and rigorous community-based planning. The WHO has also developed a patient-­ centered health care strategy at the community level [22, 23]. The aim of this strategy is to reduce health care costs, improve the quality of care, decrease the length of hospital stay, move toward community care and utilize non-hospital resources, as well as providing appropriate and quality home care [24]. Changes in policy priorities, use of community-­ based approaches to solve care problems, demographic changes and the increased need for long-term care, shifts in the family structure from extended to nuclear, more participation of women in society as workforce, changes in people’s attitudes toward and expectations from health care services and the increased demand for private services in society have led health policymakers to address these needs and replace the traditional approaches to hospital care with community-­ based care, in regard with NCDs [25, 26]. Community-based care has a unique place in the field of care provision due to reasons such as reducing costs, increasing patient’s satisfaction, minimizing the need for hospitalization, providing comprehensive services, controlling chronic diseases, adherence to treatment, improving the quality of life, increasing the patients’ knowledge of their disease, self-management and social engagement [27–30].

Cancer as a Non-communicable Disease Cancer is a chronic disease with an increasing incidence that has risen to 18.1 million cases globally, according to the 2018 WHO report. In addition, according to this report, the latest c­ ancer death rate is around 9.6 million, known as the second leading cause of death worldwide [31].

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In Iran, the prevalence of cancer is increasingly on the rise and is recognized as the second leading cause of death. In 2016, 82% of deaths in Iran were due to chronic diseases, with cancer accounting for 16% of the total cases [32]. As the WHO predicts, in 2020, cancer incidence in Iran will increase to 85,653 cases and would cause 62,897 cases of cancer death [33]. In recent years, rapid advances in the early diagnosis and treatment of cancer have led to an increased number of cancer survivors. In some studies, cancer survival rate has been reported to be up to 85% in Iran [24, 34]. The mean age of patients with several types of cancer in Iran is lower than that in other countries. The age of onset is an influential factor in the survival rate of these patients. Cancer at an earlier age is associated with an increased survival time. Therefore, it can be said that Iranian cancer patients are mostly younger and exposed to complications for a longer period of time [35]. However, older survivors experience more complex conditions due to underlying problems and comorbidities [24]. Cancer survivors, on the other hand, face unique challenges in both short- and long term [36] that are related to their physical, mental, social and functional health, and lifestyle changes [37]. These patients are exposed to a wide range of complications caused by the disease and its treatment, as well as physical, emotional, mental, social and lifestyle changes that can lead to a reduced quality of life [38, 39]. Given the family’s key role in providing care for these patients, family members also face many problems and challenges that can lead to a decreased quality of life, and thus decreased quality of patient care [40, 41]. Therefore, patients and their families need complex health care at all stages of the disease, from the diagnosis to treatment, follow-ups and end-of-life care as a comprehensive care [42]. Comprehensive care is an approach that addresses all the patient’s needs and usually requires a coordinated multidisciplinary care team. The main goal is to help improve the quality of life in the patient and his/her family [43, 44]. A large part of cancer care is provided in the form of supportive and palliative care for patients.

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There are different structures for providing this care, varying in each country depending on the structure of the health system. In 2014, the World Health Organization identified the access to palliative care as a key component in any health care system and emphasized the provision of these services, especially at the level of primary care and home care [28, 44]. The by-laws for the Development of Cancer Supportive and Palliative Care in Iran are formulated in seven chapters, based on which the levels of supportive and palliative care provision, hospital unit, counseling team, clinic and home care team are defined [45], in line with the levels recommended by the WHO guidelines [46]. Since palliative care clinics, home care, long-­ term care facilities and hospices are defined as out-of-hospital settings of palliative care provision, that is, at the community level, this chapter presents a review of the status quo of service provision in these settings in Iran.

Palliative Care Clinics The availability of supportive and palliative care for all patients is an ethical and legal obligation in the field of health. In Iran, the National Cancer Management Plan begins inclusively and comprehensively in various areas of fighting cancer in the form of diagnosis and screening programs, and ends with supportive and palliative care plans. One of the components of this program is the development of palliative care management instruction, which includes the development of a service delivery network, infrastructures, manpower, facilities, as well as pathways for service delivery, monitoring and evaluation [47]. Palliative care requires a well-structured design and varies based on the circumstances and the resources of each country [48]. Although in recent years, these services have not been systematically provided in Iran, the most common structures for providing them were hospital ­sectors [30]. However, due to changes in the levels of needs and public awareness, receiving outpatient or home-based palliative care is considered a priority for patients, families and

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caregivers, and the World Health Organization also emphasizes the provision of these services at the community level [49]. Although in the current situation, health policymakers are aware of service shift from hospital to home, adding these services to the Iranian health system structure requires some changes, which most notably includes focusing on treatment at the level of treatment centers and the absence of nurses at the community [12]. Due to the weakness of community-based service delivery structures, cancer patients receive most services at the hospital and are mostly referred to doctor’s offices and various hospital wards. Perhaps one of the major challenges faced by the current health system is how to create a link between the primary level, that is, community-­ based services, and secondary level, the healthcare services [12, 50]. Some Iranian studies have shown that palliative care clinics are the most appropriate setting for hospital care. Therefore, health policymakers address this challenge by designing and establishing a link between the primary and secondary levels through establishing hospital-based palliative care clinics [51]. Numerous studies have also shown that the end-of-life care in outpatient consultations provided at these clinics has higher quality than inpatient services do. According to the qualitative study conducted by Khanali Mojen et al., based on the experts’ opinions and viewpoints, this structure has the highest priority [52]. At present, the current structures for providing community-based health services, home care centers and public clinics as well as health centers and health homes are facing challenges such as insufficient expert staff, and in other cases, high costs due to the lack of insurance coverage and lack of easy access, which diminishes the provision of these services at the community level [50, 53, 54]. In advanced countries, palliative care service provision is considered as a triangle, with the base being community-based services, and specialty services gradually move toward the top of the pyramid, indicating the classification of palliative care services [55, 56]. In Iran, this triangle is inverted due to the provision of specialty ser-

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vices at the third level, known as tertiary hospitals, and most patients are referred to this level. Therefore, these patients are linked to the community level only through hospital clinics in order to facilitate the shift from hospital to home. Therefore, in response to this need and also according to the World Health Organization’s recommendation regarding the necessity of service delivery at PHC level, health policymakers have considered it necessary to establish hospital clinics and have implemented programs to make them executable. In 2018, the Ministry of Health imposed the establishment of hospital clinics to 14 universities of medical sciences, and also trained the necessary workforce for this purpose at the national level. Based on this program, 18 specialty hospitals with oncology, radiotherapy and chemotherapy departments were selected, from each of which two to four general practitioners and also oncology nurses were introduced. The program was approved and implemented as two theoretical and practical courses during 240 educational hours [55, 57–59]. In order to execute this program and to achieve the goals of the Cancer Centers Classification Program in the National Cancer Preparation Program, the by-law of establishing these clinics is also being drafted and approved [60]. According to the by-law, these centers, which are established in hospitals and preferably near the emergency departments, are required to provide outpatient and consulting services by trained physicians and nurses. In response to the different needs of patients at different levels, these clinics are connected with the three sectors, home care, inpatient wards and specialty clinics, to facilitate access to services, in case patients need each of these levels. Service delivery pathway at these clinics begins with an assessment done by trained nurses and physicians, and if more specialized services are necessary, it is referred to other departments and followed up by the nurse. An overview of the proposed clinic and the pathway of service delivery is presented in Fig. 1. In Iran, these clinics were designed in cancer centers in Type-II and Type-III in the cancer regionalization program. When these clinics are combined with inpatient consultation services,

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Specialist nurse

Personal visit Periodic care

Specialist GP

Home

Referral Education management Patient Symptoms (home care, phone ( patient, family, consultation, assessment management

Referred by Lower levels (general hospital,…)

inpatient and specialty services)

Emergency ward Other hospital wards

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caregivers)

Specialist team Inpatient

Oncologist Other specialty groups

Other types of care Supplementary medicine Traditional medicine Acupuncture medicine

Rehabilitation care Physiotherapy, lymph therapy, occupational therapy, speechlanguage therapy

Nutrition

Nutritionist. M.S and MrS and specialist

Spiritual care Social and cultural Trained care psychologist, Trained social trained priest worked, NGOs, associated with the other governmental patient’s religion organizations and beliefs

Mental care Clinical psychologist, psychiatrist

Fig. 1  The proposed clinic and the pathway of service delivery

according to WHO’s recommendation, this would be the best model in case the start-up funding and resources are limited, and since most of the expert workforce in the Iranian health system is associated with the third-level care, it would be reasonable and also cost-effective to establish palliative care clinics at this level in specialist hospitals.

Home Care Investigations done by a panel of experts on palliative care structures in Iran, focusing on criteria such as health infrastructures, social and cultural status, economic conditions and the availability of equipment and facilities in the country, indicated that some approaches, especially community-­ based models such as home care, have seemingly higher priorities [60]. In a study with the aim of prioritizing research goals in the field of cancer from nurses’ point of view, finding strategies to ensure the continuation of hospital care at home as community-based services has been one of the top five research priorities [61]. The WHO recommends the provision of palliative home care for patients in the form of primary health care, so that all patients can access this care and benefit from it in the shortest pos-

sible time, regardless of its costs [46]. This care has been considered a desirable care approach in the twenty-first century and is divided into two types: Specialized and General. The overall goal of this approach is to provide appropriate, cost-effective and quality care to maintain individuals’ ability and independence in life. However, its nature may be different from those of primary health care, secondary level of health care and even rehabilitation [46, 62]. This type of care, which is one of the major models of community-based care, is important in the management of limited resources and is aimed at reducing the length of hospital stay and treatment costs [63]. Providing such services by formal or informal caregivers at home in order to promote, restore and maintain the maximum comfort, performance and health as well as respecting the dignity of the patient and his/her family until death, which can be offered as services, associated with prevention, health promotion, treatment, rehabilitation, palliative and long-term care [64]. Among the other benefits of its implementation are the empowerment of the patient and his/her family [54], a decrease in the patient’s frequent hospital admissions due to the disease-related ­complications and problems [65], reduced emergency visits [66], as well as reduced costs [67] and length of hospital stay [68].

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This approach prevents the patient and his/her family to be left with unfinished care and also the possible complications associated with it by monitoring and following up the patient and his/ her family, as well as examining his/her care situation after discharge, and ultimately, will lead to the patient and family’s satisfaction as an outcome of care [69]. As a result, home care has the best outcome and the lowest cost compared with hospital care and is particularly preferable for the elderly, chronic patients and end-of-life care [70]. Today, home care is one of the most urgent needs of developing societies, including Iran, and plays an important role in the provision of health services by using capabilities and the capacity of families, the community and NGOs [63]. The Iranian Palliative Care Association encourages families to provide end-of-life patient care. The most important goal of this association is to reduce the costs of unnecessary hospitalizations and futile care for such patients. On the other hand, according to Iranian culture, dying at home beside one’s family members and loved ones is everyone’s wish. Moreover, the dominant religious values of Iran also emphasize caring for patients and the elderly at home and advise everyone to participate in care provision for the elderly and the disabled. Therefore, home care is in line with the prevailing culture of Iranian society and can highlight the need to establish this care model. The family is considered a social foundation in the Islamic society and Iran’s constitution, and using this potential in care helps facilitate and provide health care services at the patient’s own home, with a minimum rate of referrals to medical centers. In such a situation, the duty of care provision falls on the first-degree relatives (spouse, children and siblings). Male family members are usually responsible for the financial, practical and logistical aspects of care, while females provide care and nursing, feed patients and give them hope. Usually, the elder member of family, larger family member, preferably the patient’s eldest son, is considered to be the leader or the head of the support team [25, 29, 58].

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In Iran, few studies have been conducted on home care [25]. In a study conducted by Barati et al in 2010 on investigating policymakers’ views regarding the benefits of home care development in Iran [71], the socioeconomic advantages, and the benefits for the patient, the family and the health system were highlighted by the experts, and it was concluded that the development of this type of care is one of the significant and essential needs of the Iranian health system which can contribute to the enhancement of community participation in primary health care in Iran through utilizing the capacity of individuals, community, volunteers and NGOs [63]. In a qualitative study, the managerial aspects of home care including infrastructure and policy-­ making were investigated [72]. Focusing on treatment rather than care, the lack of appropriate infrastructure [27], the lack of access to palliative care services at home and hospice, as well as the lack of educational opportunities for nurses are among the barriers to home care, despite its social acceptance [73]. Thus practically, providing care services for cancer patients is generally hospital-based. In other words, most patients receive their required care in hospitals [74, 75]. In order to solve this problem, in accordance with the Article 22 of the by-law on the establishment of counseling centers and the provision of nursing home care, approved on July 5, 2016, under the code D/101/691 and communicated by the Minister of Health with the aim of organizing “home care” and ensuring the continuity of treatment after discharge, home care units were established in hospitals and medical centers across the country. According to the by-law, home care is hospital-­based, and the home care units based in the hospital are responsible for the patient’s referral to home care centers [76]. These units aim to organize, maintain and coordinate patient care after discharge, provide safe and cost-effective home care in order to reduce the length of stay at hospitals and treatment centers, reduce care costs, reduce recovery time, control and decrease hospital-acquired infections, rehabilitate and

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improve the quality of nursing services, and ultimately increase the satisfaction of patients and families [77]. After referring the patient to the home care center, the initial examinations will be performed by the center’s physicians and the necessary care will be provided as a care plan by physicians and nurses depending on the patient’s status, documents and medical tests. This plan will be implemented by the nurse at home. Any changes to the initial plan (such as the need to increase the narcotic dose for pain relief) should be made based on the discretion of the center’s physician. The possibility of consulting an oncologist or a fellow palliative care specialist of the center should also be considered by the home care center. If necessary, the patient should be visited by a physician at home [78]. Hospitals and medical centers can conclude a contract with one or several centers. Centers should introduce representatives to be present at the location of the unit in order to report to the home care unit after the completion of home care. Patients in need of nursing home care are identified by the nurse and the treating physician and are referred to the unit with the patient and the guardian’s consent. The unit should also submit a monthly report of its performance to the university and hospital’s nursing management [79]. The number of these centers is also explicitly stated in the Standard Manual of Style for the Number and Distribution of Counseling Centers and the Provision of Nursing Home Care and the Instruction for its Physical Conditions, Facilities and Equipment, which is approved by the Nursing Deputy of the Iranian Ministry of Health. In this regard, medical universities across the country can grant licenses for the establishment of one center for covering every 50,000 people. In order to properly distribute the centers across the city, universities can determine the number of the centers required in each district of municipality and issue licenses accordingly. In cities with a population under 50,000, it is also possible to grant licenses to two centers. Meanwhile, the Deputy of Nursing declares the criteria and the standard number of centers annually.

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Monitoring the Performance of Home Care Unit The performance of home care unit is monitored by the hospital’s nursing management. The nursing manager of university, in collaboration with the hospitals and university authorities, is responsible for following, setting up and monitoring the performance of units in hospitals and the affiliated medical centers [79]. To this end, monitoring is carried out in several areas including legal licenses, physical space, equipment (office/medical), documentations and performance [79].

 ecessary Specialists for Home Care N Provision Teamwork and cooperation are essential in providing quality home care. To this end, a team of nurses, nursing assistants, physicians, support experts and finally an individual as the technical expert of the center should cooperate: • Nurses: nurses providing this type of care are chosen based on the criteria including having a valid professional license, having a B.S degree with at least 5 years of clinical experience and at least 2 years of job experience in oncology and palliative care wards, at least 10 successful home visits along with the care team, passing palliative care and home care professional courses with a valid professional certificate, and passing courses such as pain and wound management over the past 2 years. • Fellow ranks, including nursing assistants • A general practitioner trained in the field of palliative care and available 24 hours a day • Support staff • The Center’s technical officer is responsible for addressing, monitoring and responding to the needs of patients and the technical staff of the center, and requires meeting the criteria such as passing palliative care and home care training courses, having at least 5 years of job experience in oncology and palliative care wards and at least 6 months of providing home care in cancer care services center [79, 80].

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There are also social criteria for receiving home care, the most significant of which are the trainability of family members or companions and their taking the responsibility of caregiving. It is also important for the family to have awareness of the disease, and their ability to provide home care for the patient should also be approved. Family involvement in patient care planning is one of the important issues that can affect the quality of services. During this process, the family must receive the necessary training. The patient–family relationship with the specialist physician should continue at the time of the diagnosis of malignancy until the patient’s death, and this relationship should be mutual [79, 81]. In this regard, in Iran, due to the chronic and recurrent nature of cancer on the one hand, and the need for symptom management and the treatment of the disease on the other hand, the end-of-­ life care standard service package for cancer home care is classified into two types of services: • Public services that can be generalized to other chronic diseases • Specialized services designed specifically for cancer patients in the form of supportive and palliative care [78].

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This criterion is scored on a scale of 0–100. A higher score indicates the severity of symptoms. A score above 7  in one or more cases indicates the severity of complications. Palliative Performance Scale (PPS) also focuses on the movement, activity, the evidences of disease, self-care, intake and the level of consciousness. PPS ≤ 40 is an indication of end-of-­ life, palliative and specialized care [78, 82–85]. Based on the above criteria (e.g. PPS: 100-­ 40), in regard with the instructions for the establishment of home care unit for patients during the active phase of cancer treatment, and after the treating physician’s approval, the most significant services provided at home are as follows: Simple wound management, nutritional care, ostomy care and care training, examining the patient and the family’s adherence to treatment, types of injections according to the physician’s instruction, urinary catheter insertion and maintenance, pain management (pharmacological and non-pharmacological) based on existing guidelines and blood sampling according to physician’s instructions. In cases where it is not possible to manage the patient at home after the nurse visits, the consultant contacts with a fellow physician of the service center or the referring physician, and can refer the patient to the hospital in coordination with the physician and the hospital [79].

In order to determine the care level and consequently providing the appropriate and quality home, it is necessary to estimate the severity of the disease. Two tools are used to determine the severity of cancer: Discharge Edmonton Symptom Assessment System-­ revised (ESAS-r) is a symptom screening tool the Based on the available evidences and documents utilization of which is necessary, because not con- of the patient’s health status, formulated criteria, trolling these symptoms can exacerbate the nega- and the patient and the family’s opinions, decitive effects on the quality of life in these patients sions are made about the patient’s discharge by and may threaten the continuity of care and treat- the treatment team. The most important discharge ment due to increased costs of complications. criteria are: This tool can be completed by the patient, the Changes in the patient’s medical condition, caregiver and the professional staff. The ESAS-r the lack of improvement and the need for referral consists of nine visual items as follows, and one to the hospital, change in the patient’s social conblank item based on the patient’s opinion: dition, services disproportionate to the patient’s problems, the achievement of care goals set in Anxiety, Depression, Drowsiness, Lack of care plan and death. Appetite, Nausea, pain, Shortness of Breath, Transferring the patient to the hospice and Tiredness and Overall well-being long-term care services is recommended in case

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home care conditions are not met (the lack of caregiver at home, abandoning, neglecting or abusing the patient). Although there are no such centers in Iran yet, and currently, the by-law for their establishment has been developed and submitted to the relevant authorities for legislation and legal reviews [78, 79].

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experience anxiety and depression. Cancer is equally stressful for the patient’s family and profoundly affects the economic situation and daily functioning of the patient’s relatives. The economic shock often includes reduced income and the expenses associated with the costs of health care [89]. The activities of institutions located in different Iranian provinces [28] mostly include socio-­ economic (care and treatment funding), preventive and educational (publishing books and magazines to improve people’s knowledge  and awareness), research (providing databases and assisting researchers), therapeutic (physical, mental) and rehabilitation (providing facilities, establishing cottage hospitals) supports. Depending on the type of the service provided, these centers can be divided into two major categories of child care and adult care.

Iran is a vast country with different ethnicities, with a 99% of the population constituted by Muslims and different minorities such as Christians, Armenians and Jews [86] living in it. In addition, the Iranian health system follows the referral and classification system, and its services are provided as primary health care services for the community. The system is structured in a way that comprehensive urban and rural health centers are each responsible for delivering health • Service Delivery to Children services to a specific area [87]. In home care provision as a modern care Various centers across the country provide approach, private centers and charitable orga- services for children and their families. The nizations also provide scattered home-based major goal of all of them is to prepare the necespalliative care services to the covered popula- sary facilities for the child’s health to be restored, tion [44]. as well as providing subsidiary support. In addiIn other words, in addition to the cooperation tion to providing financial support, these instituand coordination of government organizations, tions have directly made extensive cooperation non-governmental charitable organizations and in providing appropriate care. Mahak Charity is institutions also play an important role in fighting an example of such institutions in the field of cancer. Since the costs of cancer diagnosis, treat- therapeutic and palliative care services for canment and control are so high, it is predicted that cer children. However, this institute does not even middle-class people of the society will not offer home care services and has only a tempobe able to afford them. Therefore, non-­ rary residence for families who have brought governmental charitable organizations play an their children to other cities to the institute for important role in supporting cancer patients, and treatment. governments do not see themselves needless of receiving aid from such organizations. Thus, gov- • Service Delivery to Adults ernments facilitate the establishment, development and delivery of services to patients by The centers seek to educate, prevent, treat and providing the necessary conditions through provide care for adult cancer patients. Raising NGOs [88]. awareness on common cancer symptoms, the In this way, the high costs of cancer patients complications of some treatment approaches, are partly covered by charitable organizations such as radiation therapy and chemotherapy, and which can reduce the financial burden of cancer acquaintance with pharmaceutical centers across patients and help them manage their disease. Iran are also among the important goals of these For many patients, the initial diagnosis of can- centers. However, since many years ago, pricer is shocking, and more than a third of patients vately managed institutions under the supervi-

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sion of the Ministry of Health have also provided medical and paramedical home services for patients, and part of their job description is to provide education and consultation for the patient and the family in the field of self-care and following the instructions prescribed by the physician. Noticing these issues after service provision indicates that although in the past the Ministry of Health focused on the secondary level of care, that is, treatment in hospital settings, statistics show that today focuses are on the primary level of care. There are currently two home care plans being executed across the country: a neonatal home care plan in Isfahan and an elderly care plan in the suburban areas and cities with less than 50,000 people. In charity and private sectors, there are two home care centers active in Isfahan and Tehran for cancer patients run by the Ala Charity Foundation, which were established in 2010 and 2016, respectively. Although many centers seek to help cancer patients and their families voluntarily without government supports, these patients and their families are still under the burden of the disease and its consequences. One of the items that can be effective in enhancing and improving patient service is interprofessional and intersectoral collaboration. In other words, there should be proper coordination and collaboration between the health service settings such as home, hospital, primary health care practitioners and health centers, and different levels of health system from health homes to specialty hospitals, NGOs and volunteers can help patients [66]. Today, it is hoped to increase the satisfaction of patients and families and reduce their problems by the development of home-based and community-based care as one of the important and urgent needs of developing communities such as Iran, carried out through the proper provision of this type of care with the aim of organizing, maintaining and coordinating care provision for patients after their discharge from hospital, and also utilizing the capacity and potential of NGOs and charitable centers and organizations [63] which are voluntarily operating in large numbers at the community level.

Barriers to the Provision of Home Care Providing home care seems to gradually become an alternative to hospital service delivery [25] due to greater satisfaction in patients and their families, and the use of advanced technology, and research results continue to approve home-based hospital care and refer to it as something accepted in today’s Iranian society [61, 73]. However, given the prevailing traditional attitude of the Iranian society [28], the economic and social situation conditions of the country and the level of access to various resources, the possibility to provide home care should be investigated. In other words, it is necessary to study the barriers to this type of care. According to the results of many researches, the best approach to the provision of this type of care for cancer patients is to remove some of the main barriers, the most important of which are cultural, spiritual and religious beliefs affecting care, insufficient education of staff, the shortage of specialist staff, the lack of social awareness about the services provided, insufficient funding, the lack of instructions and guidelines and time constraints [73, 90]. Iran has a traditional culture and a religious atmosphere [58] which can have effects on providing home care. Cultural and social factors influence the approach to providing care for patients. In other words, the type of care depends on the context in which the nurse is serving. Even the legal and ethical issues that nurses may face when entering the patient’s home depend on the cultural and social background of patients and their families. Therefore, social acceptability is considered a major factor in the development of any plan [91]. On the other hand, the level of knowledge and skills of the care team members is of great importance. These people must receive professional trainings and become qualified to enter patients’ homes. In fact, education, necessary competencies and, as a result, social acceptability are among the most important issues to be considered; if not addressed, they will be a barrier to the implementation of home care. Therefore, the lack

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of educational programs with the aim of empowering professional staff in providing these services has been referred to as an important challenge in Iran [44, 92]. In order to provide specialized staff for home care provision in Iran, experts with Master’s degrees in the field of community health nurse were started to be trained. However, despite years of professional training, there is still no skilled nursing force for home care provision, which may be due to the lack of a definition for their position at the community level and the lack of job descriptions for them [93]. In advanced countries, efforts have been made to solve this problem by training nurses in specialist roles and primary care roles, the first one for providing clinic-based care, and the second to provide community-­based care. However, given the complexity of providing home care and community-­ based care, sufficient evidences are not available in this regard [94, 95]. Due to the fact that the society’s population is growing older, and subsequently, the prevalence of various chronic diseases, home care is considered as a care delivery model and an important and significant need of the Iranian health system. Although the implementation of this type of care may be disturbed due to the above barriers, it is possible to establish home care in the best way possible and to overcome these barriers by utilizing the existing potentials, applying functional changes in the nursing education curriculum and using the experiences of leading countries in this regard, as well as conducting appropriate researches.

 ong-Term Care Facilities L and Hospices In recent years, rapid advances in the field of early diagnosis and treatment have led to an increase in the number of cancer survivors. In some studies, the survival rate of cancer patients in Iran has been reported to be 85% [24, 34]. The mean age of patients with different types of cancer in Iran is lower than that of other countries.

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The age of onset is an important factor in the survival rate of these patients. Cancer at an earlier age is associated with increased survival time. Therefore, it can be said that in Iran, cancer patients are mainly younger and experience complications for a longer period of time [3]. However, older survivors experience more complex conditions due to the underlying problems and comorbidities [24]. Cancer survivors, on the other hand, face many unique challenges both short and long term [36], that are related to their physical, mental, family, as well as functional health and lifestyle changes [37]. These patients are exposed to a wide range of complications caused by the disease and treatment, and physical, emotional, mental, social and lifestyle changes that can result in a decreased quality of life [38, 39]. Given the family’s vital role in caring for these patients, family members also face many problems and challenges that can lead to a decreased quality of life in them, and thus a decrease in the quality of patient care [40, 41]. Therefore, cancer is considered a chronic disease today, and the main focus is on providing long-term care for cancer patients [96]. In addition, universal health coverage (UHC) is one of the major goals of the World Health Organization and is defined as everybody’s having access to health services with the necessary quality, without experiencing financial pressure. It also encompasses a wide range of quality primary health services in the field of prevention, treatment, rehabilitation and palliative care [97]. Since chronic diseases such as cancer can only be managed by providing long-term care [98], it is also necessary and increasingly urgent to establish long-term care systems in Iran [98, 99].

Long-Term Care Facilities Long-term care includes a variety of services designed to address the health or care needs of an individual either short or long term. These services help the individuals who are unable to carry out their daily activities on their own, need constant care after being discharged from the hospi-

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tal and need to be provided with care in specific circumstances. The purpose of these services is to help people live as independently and safely as possible. This type of care is provided in different settings, such as homes, nursing homes, day care centers and on the community level, and by different caregivers, formal and informal, depending on the individual’s needs [100]. In these systems, appropriate, cost-effective and long-term integrated care is provided for people. Depending on the funding and the national context, care may be provided by families, the civil society, the private sector and/or the public sector. Governments are not obliged to carry out all the activities in this area, and their general responsibility is to ensure the proper functioning of the system [101]. Long-term care systems, including hospices, are necessary in all countries to help improve well-being and to address the needs of the individuals whose capabilities and capacities are reduced. In addition to this need, the available data indicate a large gap between the provision and access to these services in many low- and middle-income countries [102].

The Context of Long-Term Care in Iran Various studies have emphasized the importance of inpatient care centers, outpatient clinics and home care programs for cancer patients [103, 104]. Literature review shows that in other countries, a variety of care settings are designed and developed to provide long-term care. In Iran, the most common formal pattern of long-term care is nursing homes. In these centers, various groups of people with disabilities and different physical and cognitive conditions, especially the elderly, are accommodated. Many of these centers do not meet the required standards and usually do not provide quality care [105, 106]. However, in Iran, the first legislation in the field of home care dates back to 1999, and these services were initially launched almost 20 years ago. However, an overall assessment shows that these services are not sufficiently and appropriately provided in Iran, and like many other countries, Iran faces many challenges such as care problems,

insufficient nursing capabilities (workforce), inappropriate management, the lack of proper infrastructures, cultural issues, improper payment patterns, poor interprofessional coordination and cooperation, and job dissatisfaction [23, 25, 28]. In addition, Iran lacks formal programs and structure to provide palliative services. However, in recent years, few centers have provided palliative care services for cancer patients sporadically, at home and in in-patient wards, mainly in major cities. These services are provided without reference to clinical guidelines and merely based on the caregivers’ experience and knowledge [28, 29, 58]. A major challenge in providing long-term care is the provision of stable financial resources [107]. In Iran, no types of long-term care services are currently covered by social insurances, and the costs of these services are paid by families [3]. Moreover, there is no specific insurance coverage such as long-term care insurances, and health and social insurance coverage is subject to the individual’s occupational status. In the case of supportive and semi-supportive insurance, only certain social strata are covered. Iran’s demographic and economic outlook over the next two decades emphasizes the importance and the necessity of strengthening and expanding insurance plans, given the limited government resources. It can be said that the infrastructure of long-­ term care services and programs encompasses all the facilities, policies and laws required in the field of chronic diseases and palliative care [21]. Recently, in regard with the establishment of these services, regulations for the establishment and operation of long-term care and treatment centers, and standard care service packages of care provision for cancer patients and end-of-life patients have been formulated by the Deputy of Nursing of the Ministry of Health and Medical Education for insurance coverage [108], the implementation of which will depend on the pricing of services.

Hospice Care Due to the significant advances in medicine and an increasing access to various therapeutic and

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care services, patients with chronic diseases in the advanced and terminal stages also undergo highly invasive treatments. However, these measures are not accompanied by better quality of life and outcome for the patient and family, and are usually in conflict with their preferences. In fact, when long-term treatments are not helpful and death is inevitable, these patients will need to receive special end-of-life care [109, 110]. Patients in end-of-life stages have special and complex physical, social, psychological, spiritual and supportive needs, which if not addressed can make patients and their families uncomfortable and distressed. Some of these needs include the need for pain control, symptom management, a peaceful passing in an environment similar to their own homes, support and serenity, and dealing with disease-related problems [111, 112]. Investigations show that in Iran, the majority of expected deaths occur in hospitals, especially in the intensive care units, while these patients do not receive quality care in the end-of-life stages despite spending high amounts of money [19, 113, 114]. The quality of end-of-life care is a major challenge for patients and their families, and for the health policymakers and professionals to the same extent, and must be provided equally [115]. Therefore, the attention of patients and their families is of particular importance at this stage. Nowadays, the main approach to providing care for patients who are not able to receive homecare is to provide hospice services [115]. Hospice care is considered as a part of long-­ term care [116] and is a special type of care in which patients with life-threatening and terminal diseases and also those in end-of-life stages benefit from the mental, spiritual and therapeutic support of professional health teams and non-­ professional teams, such as service volunteers and priests. This type of care focuses on controlling pain and other symptoms of the disease, so that patients can experience more comfort as they approach end of life. Such care is also provided for patients’ families [117]. The aim of providing end-of-life care, which is generally ignored in the health system, is to increase the quality of care and the quality of death for patients and support families and caregivers [4].

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 he Background of Hospice Care T in Iran It can be said that the first Iranian hospice centers were established in the early 1920s to provide care for patients with terminal diseases such as leprosy, tuberculosis and mental illnesses in some cities. However, it was not until 2000 that modern palliative care was first launched in Iran, and the first palliative care center was established in 2006 at the Cancer Institute of Tehran University of Medical Sciences, and service provision mostly began in 2009. Along with the opening of new centers in Tehran, others were launched in cities such as Isfahan and Zanjan [118]. Iran lacks formal plans and structures for providing hospice services and end-of-life services [28, 29, 58]. However, the regulations for the establishment and operation of long-term care and treatment centers also consist of hospice services [108]. Based on the national action plan for non-­ communicable diseases, plans for the next two decades should focus on the specific needs of patients with the most common chronic diseases, especially cancer. Moreover, studies done in recent years have shown that demand for end-of-­ life care is increasing and that patients and their families are seeking optimal care [119]. Meanwhile, due to the increasing rate of chronic diseases especially cancer and ageing population, while considering the successful experiences of the developed countries, it is necessary to design and develop hospice services in Iran. However, providing these services depends on various factors such as the cultural and social status of the community [115].

Challenges to the Establishment of Hospice Centers in Iran In the establishment and development of hospice centers in Iran, important issues should be taken into consideration, which may have facilitating or inhibiting roles in many aspects and lead to the acceptance or rejection of these types of care and centers.

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 egal and Ethical Considerations L There are also legal and ethical problems and limitations which need further inconsideration prior to designing and developing hospice centers in Iran. For example, the necessity of performing resuscitation operation despite the patient’s irreversibility, due to the lack of written DNR instructions for the end-of-life patients and religious barriers, the need to carefully record measures during resuscitation from the fear of complaints and legal accountability, and the lack of clinical guidelines and protocols regarding the end-of-life care [120]. In addition, in the Iranian health system, patients and families usually play no role in deciding whether to continue or stop the treatment [119]. The major challenge in this regard is the opposing opinions and points of disagreement between the medical staff and the patient’s relatives concerning treatments that are medically useless or ineffective according to the physicians, but is requested by relatives. On the contrary, there are medical suggestions and treatments that are considered useful by the medical staff, but are not accepted by the patient or relatives due to treatment costs or other reasons. In such cases, legal and ethical challenges increase when the patient is willing to undergo these measures, but the relatives are reluctant to accept or to take action after only apparently accepting it [110, 121]. Finally, any of the above cultural-religious, ethical and legal issues can be considered as either an opportunity or a threat to designing and development of hospice services in Iran. However, in the Iranian society, culture and religion are obviously the two important factors in the social perception of end-of-life issues [122]. Moreover, the key role of families in providing hospice services cannot be ignored [123]. It is also necessary to fill the legal and ethical gaps before designing and developing hospice centers.  ultural and Religious Issues C Over 98% of the Iranian population are Muslims and Iran is considered a religious country. The issue of death and the end-of-life stage is strongly

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and explicitly linked to religious beliefs. From Quran’s perspective, Muslim’s holy book, the afterlife world is the real world, and death is unpredictable and inevitable [124]. On the contrary, Islam has mentioned the inherent values and the sanctity of life, and regarded the worldly life as a worthwhile opportunity for mankind to move toward a better future in the eternal world of the afterlife, and the preservation of life as a duty. Humans need time and should pass the stages of spiritual journey in this world to reach the ultimate perfection. Thus, paying attention to the worldly life is of great importance, and many Muslim prayers focus on seeking prolonged life from God [122]. Accordingly, every type of care with the aim of meeting this necessity in life is considered sacred. Therefore, the most important right of a dying person, like other living individuals, is to keep hope and be provided with care until death, by those who can keep his/her hopes alive. Dying individuals should be able to express their feelings and attitudes toward the proximity of death in their own way and must not be deceived. They should be supported by their families, be helped to accept death and pass away in peace and with dignity. They should not be judged by others, and their personalities should be respected. They must participate in decision-making regarding their own care, must not die alone and must be relieved from pain. Their questions should be answered correctly, and their bodies should be cleaned and respected. Moreover, in all cultures and particularly Islam, there is valuable and profound religious advice for patients and their relatives to manage this period of life [18]. Therefore, the acceptance of hospice care in Iran is considered a paradox. In the Iranian society, given the human values​​concerning life and death, the importance of religion, and the society and the public believing that their loved ones should be provided with the end-of-life care as well as possible, it seems that these services will be welcome. In addition to these issues, the problems and concerns of families regarding the provision of end-of-life care for their patients, such as lack of knowledge and insufficient time, duplicate the need for these centers. However, on the

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other hand, in the traditional society of Iran, the religious and cultural beliefs and issues of patients and their families may lead to the rejection of these types of services in hospice centers [125]. According to the studies conducted, caring for end-of-life patients, despite being irreversible, requires to be continued until the last moment, in spite of the imminent death. This commitment is rooted in religious attitudes and the caregivers and families’ belief in miracles and the possibility of unexpected return to life until the last moment. Additionally, based on Iranian Muslim’s particular value system concerning death, caregivers and patients consider end-of-life care as a valuable opportunity offered by God, and believe that they have been given a special privilege which will have good results and leave valuable experiences in their lives [119]. One of the most important parts of end-of-life care is religious care, which is mainly provided by the patient and his/her family [126]. Furthermore, the cultural and religious structure of the country has led even health professionals to have a negative attitude toward euthanasia and the end of life, despite the patient’s being untreatable [125]. On the other hand, culture is considered to be a determining factor in health care due to its impact on lifestyle, beliefs and values, the individuals’ perception of quality of life and palliative care, the interaction with the health care system, and decision-making during the illness and end-of-life stages [123]. Numerous studies have shown that individuals’ cultural background and their ethnicity/race have a relationship with their end-of-life preferences. Therefore, along with the facilities and resources available in the health system of each country in designing a specific service delivery structure, patients’ choice is also of significant importance [123, 127]. Choosing a place for care and going through the end-of-life stages and also the place of death are influenced by the social and demographic characteristics of patients and their caregivers [123] and are rooted in culture [128]. Many Iranian families still want to receive services in their homes [129], despite the fact that

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the results of some studies in Iran emphasize the establishment of centers dedicated to end-of-life care and hospice service provision [119, 130]. The participants in the study conducted by Heidari et al. preferred to receive end-of-life care first at home and then in hospital rather than hospice centers [131]. In addition, Estebsari et  al. have considered home care and being with the family in the familiar environment of home as factors affecting the patient’s quality of life in the end-of-life stage [132]. In Iranian culture and society, extended families with traditional structures mostly tend to provide care for patients, especially in the end-of-life stage, and prefer to care for their dying patients at home [133]. However, some recent studies have also indicated that Iranian families face issues and have concerns about providing end-of-life care due to economic and livelihoods problems, family nucleation and being too busy [125, 131]. Therefore, the patient’s and his/her family’s preference to receive palliative home care, especially in the end-of-life stage, needs further investigation [123, 128, 129]. Early discussion of the prognosis of disease and end-of-life care options will contribute to faster acceptance of palliative care at these stages. The tendency to tell or know the truth about the disease or death is considered a value in Western cultures, and every patient has the right to know about his/her condition, so that he/she can make decisions about the end-of-life care. However, in some societies, talking about the diagnosis, prognosis and death is a taboo, as it kills hope and leads to concerns of reduced adherence to treatment [134]. In Iranian culture, it is also common to hide the truth about the disease and death from the patient, and these cases are only told to the patient’s family, mostly at the family’s request, which is because it is believed that the truth will cause hopelessness and increased suffering and discomfort in the patient. However, in some cases, studies have suggested that patients prefer to know about the disease, its diagnosis and its prognosis [120, 134]. In addition, the Iranian society has a variety of ethnicities and subcultures that have impacts on their health behaviors

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and beliefs [121]. The results of some studies have indicated that cultural differences have had a major impact on the acceptance and the use of hospice services. These differences should be taken into account while designing and developing these services in each society [135].

 thical Challenges to Providing E Community-Based Services The expansion of palliative care in the community is a symbol of respect for the dignity and heeding the wishes of every single patient for the rest of his/her life, and has been raised as an ethical responsibility. Since palliative care is more focused on the patient’s life and death, most care teams are faced with the question “What is the right decision?” Thus, the ethical challenges increase in this type of care. The following are some of these challenges considering ethical principles.

The Principle of Autonomy In Iran, due to the stigma of cancer which is a reflection of mortality and death, and also due to the types of family relations and emotional bonds, physicians choose not to tell the truth to patients. However, in recent years, patients’ right to receive information and make free decisions while receiving health services has been one of the five principles of the patient’s bill of rights, which is imposed by the Health Deputy of the Ministry of Health and Medical Education to health centers, and has been considered an indicator in the evaluation of health centers in recent years [136]. In addition, the formulation of a palliative care ethical guideline is another action taken in Iran, according to which, the patient is the primary decision-maker [137]. In addition, the codes of ethics approved by the Ministry of Health have been communicated to universities, and the establishment of ethics committees in hospitals and universities is emphasized, in order to prevent arbitrary reactions to ethical challenges in providing care for cancer patients.

Benefit and Do-No-Harm Principle When a patient’s condition is deteriorating and the treatment is ineffective, end-of-life care plans are brought up in order to avoid futile care, leading to medical, legal and ethical challenges [138]. Futile treatments increase the quantity by prolonging the patient’s life while ignoring the quality of the remaining life which is the ultimate goal of palliative care [139]. Although AAP has prohibited heavy treatments in order to maximize the quality of life at the end of life, there are still different opinions surrounding this issue. The attitude of the treatment team is an important factor in end-of-life care [140]. The results of another study in Iran showed that 78% of patients and 63% of physicians agreed with performing at least one case of euthanasia. Voluntary active euthanasia and voluntary passive euthanasia, in which the treatment is withdrawn, were the types of euthanasia upon which patients mostly agreed [141]. However, according to the principles of Islamic jurisprudence, Do-Not-Resuscitate, that is, ending one’s life, is unacceptable and there is no official law for this purpose in the country. According to Islam, human life is a divine blessing that one must strive to preserve, and no one can even decide about ending his/her life. Therefore, helping to end one’s life and active euthanasia are rejected, in any form [142]. Since there are no approved ethical and clinical guidelines for DNR in Iran, decisions for DNR are made by the treating physician and, in many cases, without the patient or family’s awareness. In line with the increasing public pressure for the legal recognition of euthanasia in order to end the suffering caused by terminal diseases, it is increasingly necessary to pay more attention to the ethical issues for improving palliative care. To this end, Peimani et al. have suggested to formulate a national NDR guideline in accordance with the ethical principles, scientific standards and Iranian native culture [143].

The Principle of Justice Discrimination in accessing health care, along with a significant increase in the costs of treat-

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ment, has caused challenges on the way of establishing social justice as an ethical principle. In Iran, according to the studies on the palliative care, the fair distribution of resources, as well as easy access to services are reported as patients’ basic needs [52, 54]. Studies on the classification of palliative care services as well as designing a palliative care model in hospice and home care structures would address the need for the provision of community-based services [144]. At present, economic problems have been reported as a cause to impose burden on families [145]; thus, some patients may not be able to afford the costs due to financial problems and are deprived of these services. Therefore, protecting this vulnerable group is an ethical responsibility that requires easy access to palliative care services. Policymakers are bringing up and developing palliative care packages, in response to this need in cooperation with the Deputy of Treatment and Deputy of Nursing of the Ministry of Health, and insurance companies.

Challenges to Providing Community-Based Services UHC needs fair, effective and efficient health systems that address priority health care needs through integrated and people-centered care. The quantitative and qualitative availability of health care workers is an essential factor in achieving UHC [146]. In line with accessing human resources, nurses, as the frontline health workers, play a vital and key role in achieving the goal of universal health coverage [147]. The 66th Session of the WHO’s Regional Committee for the Eastern Mediterranean Health Ministers has emphasized the designing plans to promote and enhance community health nursing, with regard to the importance of nursing services in health service systems and its role in the universal health coverage. Additionally, with the beginning of 2020, designated by the WHO as the “Year of Nurses and Midwives”, this organization has compelled governments to empower nurses and midwives at various levels of service provision, including community-based care provision [148].

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However, community health nurses are currently facing barriers and challenges in providing specialty services in the form of specialized job descriptions developed by the Ministry of Health [24], and these nurses offer services in hospitals rather than in the community. The attitude of most Iranian health policymakers revolves around the employment of nurses at the secondary level of prevention, that is, clinical care in hospitals [10, 12]. The nurses’ role in providing quality primary health care and universal health coverage is of great importance. Therefore, policies should be made for training and recruiting nurses in the field of PHC [149, 150]. Heydari et  al. (2017), in a qualitative study with the aim of investigating the position of community-­based nursing in Iran, showed that there were no job opportunities to hire community health nurses in comprehensive health centers, that policymakers’ attitude toward the community-based nursing is not positive and that the community is not yet prepared to accept community-­based nursing services [151]. According to the World Health Organization’s report, physician-based management is one of the threats to the Iranian health system [27]. Therefore, despite the fact that educating and training community health nurses with Master’s degrees is costly for the government, their expertise is of no use [151, 152].

Conclusion In regard to the increasing need for UHC and the necessity of receiving cost-effective, available and fair services, the primary level of the health system is considered an appropriate context for the provision of palliative care services. However, given the absence of a referral system, there is virtually no link between the primary level of service delivery, that is, community-based care, and the secondary level, that is, hospital-based services. Therefore, shifting care settings from hospitals to the community level faces serious challenges. Despite the importance of community-based services, barriers such as the community’s ignorance of these services; cultural, religious and

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Part XX Middle East: Iraq

The Current Situation of Palliative Care Services in Iraq Samaher Abdulrazzaq Fadhil and Hasanein H. Ghali

Introduction Background Iraq is one of the easternmost countries of the Arab world. In ancient times, it was known as the region of Mesopotamia, which means “the land between the rivers”. It is the land of some of the earliest-known civilizations, namely Sumer, Akkad, Babylon, and Assyria. This affluent area later progressed to become an essential part of future larger nations, including Persia, Greece, and Rome, and after the seventh century it constituted a nucleus to the Islamic world. Later, in the eighth century, Iraq’s capital, Baghdad, became the capital of the Abbasid caliphate.

Demography, Religion, and Economy Iraq is 168,754 square miles (437,073 square kilometers), bordering Turkey on the north, Iran on the east, Syria and Jordan on the west, and Saudi Arabia and Kuwait on the south. Iraq is a middle-income country, estimated by the World S. A. Fadhil (*) Children Welfare Teaching Hospital, Medical City, Baghdad, Iraq H. H. Ghali Department of Pediatrics, College of Medicine, University of Baghdad, Children Welfare Teaching Hospital, Medical City, Baghdad, Iraq

Bank to have a gross domestic product of 197 billion US dollars. The economy relies mainly on income from the production and sale of oil. The total population of Iraq was estimated at 38.3 million in 2017  – Arabs comprise about three-­ fourths of the population and Kurds comprise about one-fifth. The remaining population is divided into several ethnic groups, including Assyrian, Turkoman, Chaldean, Armenian, Yazidi, and others. Islam is the officially recognized religion of Iraq and is practiced by 95% of the population. A small percentage of the population is Christian, Yazidis, and other religions. For the last three decades, Iraq has experienced almost continuous conflict including multiple wars, an invasion in 2003, and economic sanctions and sectarian tensions that have left the country in a state of chaos. This has led to political, economic, and social instability, and a poor quality-of-life for the Iraqi people, despite Iraq being one of the richest countries with an abundance of natural and human resources.

Desperate Living Conditions Since 2014, approximately 3 million people have been displaced from their homes and regions following the ISIS (Islamic State of Iraq and al-­ Sham) invasion of about one-third of Iraq’s land, including the northern and western regions. This resulted in further setbacks on all levels and was

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followed by a government endeavor to regain these areas using military force which further resulted in increasing infrastructural damage. Consequently, many Iraqis sought better living conditions within Iraq and sought asylum in camps or specially-designed temporary shelters safer governorates leaving them in a desperate need of food and health services. Many others looked for help outside of Iraq in neighboring countries and in Europe. Following the liberation from ISIS in most regions, many are coming back home; however, approximately 700,000 Iraqis are still living in camps, which offer limited opportunity to earn a living wage, and struggle to provide food for them and their families. Additionally, current figures indicate that the unemployment rate in Iraq is highest compared with other Arab countries. This, along with increasing illiteracy among young people, limited economic prospects, and political and social instability has had an extremely negative impact on the health and well-being of many people.

although coddled, are subjected to strict punishment for misbehaving. In most cases, death and illness are accepted as God’s will, and family and friends often hold social events for moral and financial support, especially in times of trouble and at the time of death. Iraq was well known and admired for its quality educational and health system in the 1960s and 1970s. Academic degrees were one of the higher priorities that families tried to guarantee for their children. A free education and a free healthcare system were introduced in the 1970s and, as of today, both are free and accessible to all people. The last three decades of inappropriate and chaotic policies have led to a dramatic decline in Iraq’s social and economic development, and the economic situation is currently complicated; many years of violence, tensions, and the displacement of its people due to security and economic conflicts have had a negative impact on the quality of life, people’s priorities, and the educational and health systems.

Iraqi Culture and Society

Iraqi Health Care System

Iraq has one of the world’s oldest cultural histories, evolving into a multi-cultural society with a rich heritage. Modern Iraq lies between two rivers, the Tigris and the Euphrates (anciently named Mesopotamia) and was an important hub in early civilization, witnessing the rise and fall of many empires and related cultures. Seventy-five percent of the population are Arabs, 15–20% are Kurds, and smaller groups (5%) include Turkmen, Jews, Armenians, and Assyrians. Arabic is the official language and Islam is the official religion (96%); others are Christians (3%) and small religious and ethnic minorities such as Yazidis and Mandaeans. Loyalty and honor to extended family and the tribe are of great importance in Iraqi society. There is immense respect for the elderly and their opinions are considered very important, regardless of the topic; women are to be protected but are usually subservient to men, although many Iraqi women have received degrees in higher education and are professionals; children,

A system of free health care was developed in the 1970s by the Iraqi Ministry of Health (MOH) and is the cornerstone of the health system and the main health care provider. The private sector also provides medical services for wealthy people and has grown in the last few years. The Iraqi MOH is centrally funded by the government and, despite its good reputation during the 1970s and early-­ 1980s, when Iraqi healthcare services were considered the best in the Middle East, it witnessed serious setbacks in the following years, causing it to progressively deteriorate. The subsequent and prolonged civil conflicts following 2003 had a major impact on the provision of health services and many health care professionals started fleeing from the country searching for a better, safer, and more reliable place to work. Despite this gloomy picture, efforts to rebuild and restore the infrastructure continue. The Ministry of Health struggles to overcome challenging obstacles and sometime sends patients abroad for difficult surgical procedures,

The Current Situation of Palliative Care Services in Iraq

radiotherapy, and bone marrow transplantation through special committees in the MOH that evaluate patients’ records and make the ultimate confirmation as to whether adequate care can be provided at an Iraqi health facility. If the case requires specialized care beyond the local facilities’ capabilities, the case file is then forwarded to another committee for financial assessment and processing of the necessary travel arrangements. There have been cases of health care professionals from various disciplines being sent to train abroad through contracts with more developed centers. Still, local heath institutions and heath care providers work hard to provide free medical care in governmental hospitals and primary health care centers. In recent years, non-communicable diseases (NCDs), such as cardiovascular diseases (CVD), diabetes, chronic obstructive pulmonary diseases (COPD), and cancers have become pandemic at a disproportionately higher rate in developing countries. The World Health Organization (WHO) estimates that NCDs account for 80% of the global burden of disease, causing seven out of every ten deaths in developing countries, about half of them being premature death under the age of 70 [1]. Following quite a while of disengagement, Iraq must now strive to regain worldwide standards of health. Hospitals do not have the adaptability to successfully deal with their administrations. Significant general medical issues such as smoking, weight issues, and NCDs are not being adequately addressed. Cancer has become a major medical issue in Iraq, and the incidence of cancer has increased as the population continues to grow.

 alliative Care in Iraq: Current P Services The term “palliative care” (PC) is a relatively new concept throughout medical practices in Iraq, and there are currently no clinical disciplines in the curriculum of medical and nursing schools; in addition, no national program has been established to provide for palliative care.

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The improvement in the awareness of palliative care terminology is attributable to the Middle East Cancer Consortium (MECC), who invited two pediatric oncologists (Prof. Salma Al-Hadad and Assistant Prof. Mazin F. Al-Jadiry) to preside over a workshop that took place in November 2011  in Larnaca, Cyprus. Dr. Salma Al-Hadad, who heads the pediatric hematology oncology unit in Children Welfare Teaching Hospital (CWTH) in Baghdad, was one of the first to introduce palliative care philosophy and launched PC practices into the pediatric oncology unit in Baghdad. This was followed by a few short training courses and lectures on PC which were delivered to pediatric oncologists, residents, and nurses working in the Baghdad Medical City complex. Major efforts to introduce PC were carried out by the MECC and Prof. Michael Silbermann, its Executive Director, as it introduced and supported PC programs for low-resource countries in the region. Thereafter, there were rising concerns and discussions regarding the sub-optimal supportive care services and inadequate pain management for pediatric oncology patients in these countries, with an emphasis on the compassionate care provided by nurses and physicians. Meetings and workshops on PC took place from 2012 to 2016, with the participation of five pediatric oncologists and four nurses. CWTH is one of two main centers for treating childhood cancer in Iraq, with an average of 300 new cases per year. CWTH is a public referral and teaching hospital with 240 beds managed by the Ministry of Health (MOH) and the staff members who are all government employees. The oncology unit in CWTH has a capacity of 56 beds, but the number of actual inpatients ranges from 60 to 90. The medical staff includes 8 oncologists, 1 fellow (the number varies annually), 6 residents (changing every 2 months) and 25 nurses. A large number of pediatric oncology patients are diagnosed with advanced stage disease or referred with progressive disease because of poor resources and limited diagnostic ­facilities, presenting a burden to the health system, the patients, their families, and caregivers. The latter

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often experiences psychological, behavioral, and physiological issues that affect their daily lives, and palliative care stands out as an essential tool in reducing the impact that cancer has on patients and their families, alleviating suffering and improving quality of life. There is no structured or organized training for physicians and nurses in the oncology unit for delivering PC nor is there training in the field of pain management. The only available information can be found on the internet and in published articles. No local guidelines are available. Current practices focus primarily on the field of pain management, and families’ and caregivers’ skills are based on individual abilities rather than acting as a collaborative group. The pediatric oncologists provide some degree of psycho-social support and pain management with their routine clinical duties but there is no designated professional team responsible for PC. The game players consist of the patient, the oncologist, and the patient’s loved ones. No specialized PC physician, PC nurse, social worker, pharmacist, physical therapist, chaplain, sheik, or dietician is assigned to any case. In Iraq, there are no special units or outpatient clinics. In 2013, a pediatric oncologist with no basic qualifications in PC took responsible for palliative care services in her unit; she is a member of the Pediatric Oncology East Mediterranean (POEM) PC group. No spiritual advisers, occupational therapists, or psychotherapists are available, and there is no significant role for pharmacists in pain management. There is no official funding for PC or cancer care; financial contributions come from a few non-governmental organizations and individuals. Volunteer work is rudimentary and undeveloped, however, sometimes entertainment, parties, and arts and crafts are arranged by non-funded social workers, on an irregular basis. There is no home or hospice care; terminal patients are isolated in a private room, if available, to give them time with their families and to limit contact with other patients who can become fearful and disappointed by witnessing the disease progression or death of other children. Due to the parents’ difficulty to cope alone with the

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death process of their child, pediatric patients usually die in the hospital, unlike the elderly who prefer to die at home. Iraq is still recovering from a long gloomy period of political and economic conflicts. While there is a global shift toward improving quality of life and alleviating the burden of cancer and chronic illness, the philosophy of PC is still considered “luxurious”. As health institutions struggle to provide basic management and lifesaving tools, most patients and their families are uncertain about what PC is, and they resist the idea of palliation preferring to continue treatment even in hopeless cases. Furthermore, the term PC is not well-understood even by many health care professionals and providers. For all these reasons, humble steps were taken to establish the first PC Unit in Baghdad Medical City at the end of 2017, which is currently run by two anesthesiologists; however, it is still in its early stages and mainly provides pain management, which is also inadequate due to the shortage and limited availability of various type of narcotics.

Pediatric Oncology Units in Iraq In an August 2011 email, Dr. Mazin Al-Jadiry (Fig.  1), a pediatric oncologist at Children’s Welfare Teaching Hospital in Medical City Baghdad wrote: Really, I’m asking my/ourselves if we have the power to continue as the circumstances around us are not improving, but deteriorating on levels that we could never-have-imagined: chaos, corruption and a loss of principles which were already declining over the last 30 years. There is continuity of the obstacles. And, the number of patients is increasing. We feel we should/cannot be static, that we must improve our abilities and expand our capacities. This puts even more of a burden on us, both physically and mentally [2]. In Iraq, childhood cancer and leukemia continue to be a long-term health dilemma. Before 2005, pediatric tumors were treated in the three main oncology units in the large cities (Baghdad, Basra, and Mosul). After 2005, many small units

The Current Situation of Palliative Care Services in Iraq

Fig. 1  Dr. Mazin F.  Al-Jadiry; Pediatric Oncologist at CWTH, Medical City, Baghdad, Iraq

Fig. 2  Oncology team in CWTH, Medical City, Baghdad, Iraq

in other cities were established in other parts in Iraq; Erbil, Sulaymaniyah, Wasit, and in the last 3 years, the number of units have increased to include other cities such as Kerbala, Babil, and Najaf. Currently, there are 30 Pediatric Oncologists working in the country (having earned board certification or a diploma in pediatrics with variable structured training in pediatric

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oncology), and the number is increasing annually. The pediatric oncology unit at CWTH is one of two main units in Baghdad, receiving the bulk of their cases from Baghdad and the center, south, and north of Iraq (excluding Kurdistan) with significant evidence of limitations in cancer management, including surgical and radiation oncology facilities. There is no multidisciplinary team, and physicians have inadequately structured training in pediatric hematology/oncology. Nurses also lack the training needed to meet the demands of children with cancer. The shortage of effective chemotherapy medications and medicines required for supportive care (antibiotics, anti-emetics, pain medications, etc.), a lack of other supportive care facilities, and lack of infection-­control teams and policies have caused an increase in morbidity and mortality rates and have impacted negatively on the quality of care. Blood bank services also have their difficulties with the shortage of bags, kits for screening, and cell separator kits. Transferring blood from the bank to the hospital is done by the parents without proper storage conditions during transportation. Delay in referring newly diagnosed cases further impedes the management plan as patients present with an advanced stage of disease and there is no established PC program. Most children with cancer die with a DNR, which is commonly accepted by most families. Currently, in CWTH, there are 7 pediatric oncologists (Fig.  2); they are working full-time (8:00  a.m.  – 03:00  p.m.), with 1 fellow and 27 nurses. The oncologist/new patient ratio is 1:4; nurse/inpatient ratio is 1:6  in the earlier shift (8:00  a.m.  – 03:00  p.m.) and 1:15 at night (03:00 p.m. – 8:00 a.m.). All cases of pediatric tumors (including those with very advanced tumors) are admitted to and treated in the oncology unit of CWTH. At the end of 2017, pediatric brain tumors were added to the responsibilities of the oncology unit of CWTH. The average registered mortality rate has ranged from 10% to 20% over the last 10 years. Two-thirds of these deaths occurred during hospitalization and resulted from the lack of optimal

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supportive care. About the same percentage, two-­ thirds of patients, arrived at CWTH in an advanced stage of disease. The median total diagnosis delay was 55  days (from 3  days to 36  months). The median physician delay was 43 days, which is more than double the longest doctor delay mentioned in the literature; the average patient’s delay in seeking diagnosis/treatment is comparable with that mentioned in publications. This late diagnosis, along with iatrogenic complications, can make for a poor prognosis [2].

 ain Management for Cancer P Patients Many countries in the Middle East still have low opioid consumption. While the global consumption of opioids has increased throughout the past 30 years, there has been little increase in opioid consumption in the Middle East, despite increasing economic and health care development in some countries of the region [3]. In Iraq, there is a strong evidence of inappropriate pain assessment and suboptimal pain management, mostly due to the shortage and limited regulations of use of opioids and lack of proper training of health care providers. Unfamiliarity with the use of pain medicine has had a negative effect on the quality of life of patients. Pain killers such as propoxyphene, codeine, and acetaminophen are used to treat mild to moderate pain. For severe pain, oral and parenteral tramadol are available, and there is limited use of injectable (but no oral) morphine and transdermal fentanyl (on an irregular basis). Opioids for outpatients have never been allowed in Iraq and, even for inpatients, prescriptions require strict documentation and is only allowed by two physicians, according to the hospital regulations. The lack of adequate management of opioids by nurses and medical staff along with the cultural fears from addiction are the major problems associated with opioids prescription. Generally, the communication between the patients and medical staff regarding pain is poor, as they have little experience in pain assessment,

S. A. Fadhil and H. H. Ghali

which can lead to random treatments instead of following the pain management guideline. Many families interfere with pain management, the majority being resistant to opioids, as they prefer for their child to be awake and talking with them in the terminal stages rather than being sleepy. Inadequate knowledge of and inadequate training in pain management in undergraduate curriculum and postgraduate education lead to popular myths about opioids at both the medical and individual levels. Improper pain management instruction negatively affects patients’ mental, physical, and psychosocial lives and, hence, their quality of life. Additionally, some beliefs in Iraq’s culture is that Islam, being the religion of the majority, discourages people from taking opioids. For example, Layla, a middle-aged female with metastatic breast cancer reaching the vertebrae, refused to take any opioids for her intractable bone pain to alleviate her suffering as she believed that pain will bring her closer to God.

 ttitudes Towards Palliative Care A Among Health Professionals In the current frame of health services in Iraq, no information is available in the curricula or in the guidelines. Many medical health workers are not familiar with the terminology, and they do not know what PC is about. Those who are familiar with terminology think that PC is about comforting patients with terminal cancer before their death. Most of the awareness in this field lies in the area of oncology, and a remarkable number of professionals who have knowledge regarding PC practices believe that it is luxurious care in Iraq’s current situation where the health care providers are struggling to provide basic and lifesaving diagnostic and therapeutic measures. PC is a developing medical specialty and effective PC service delivery requires a strong health system, with health care providers who have the awareness, positive attitude, and desire to provide ­compassionate care to those who are suffering and dying. They should be enthusiastic and eager to deliver PC services.

The Current Situation of Palliative Care Services in Iraq

Education and training in palliative care influences not only the level of care provided but also the level of team participation among health care professionals [4]. Medical students and other health care professionals across the globe are still uncomfortable facing death and dying, despite its growing scientific base, yet often perceive PC as not important [5].

Next Step Forward An important question to ask is: how can we apply a PC program to our setting? Of course, all people have the right to receive the best possible health care when they are suffering from chronic disease and terminal illnesses, along with optimal and adequate treatment for their pain and other symptoms. The first step forward is to formally recognize Palliative Medicine as a specialty and PC as a medical specialty, as it is in most developed countries, in neighboring countries like Jordon and Lebanon. This could be achieved in the next few years in Iraq if the stakeholders and those in power have the intention to do so. Introducing PC to the curriculum of medical and nursing schools at the undergraduate level will enhance its chances. Few steps have been taken by academic professionals to promote this issue, as the main practice of PC has been in the field of pediatric oncology. Many lectures and presentations on this subject were given by oncologists and nurses in  local meetings and as part of the hospital’s educational lectures, which led to better awareness of PC among local health care providers. The subjects included different aspects of PC, such as helping people to die with dignity, to focus on reducing the families’ stress, and managing pain and other symptoms. Further research and surveys pertaining to the present-day knowledge and practices of palliative care in our health institutions are crucial to close the gap left by the deficiency of these terms and to figure out what steps are required to improve it. Awareness of the constraints and obstacles will be important when applying these steps.

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Researching PC in Iraq is confined to models assessing physicians’ and nurses’ knowledge regarding PC and pain management by answering written questionnaires about the definition and main terminologies of PC. Most of these surveys are carried out as part of a collaboration with international organizations and institutions. Still, these simple steps represent a step forward to highlighting the importance of palliative and compassionate care, with the goal of recognizing PC as a key and valuable medical discipline.

Palliative Care Barriers Cultural Barriers Culturally, health care providers struggle to tell the truth to the patient’s family, as this can cause psychological trauma; there is a risk that the family will decide to abandon treatment and seek other health professionals who might deceive them. Discussion with the family about palliative care issues is a difficult task and depends on the beliefs of the physician and the family. The perception of palliative care is almost always affected by these beliefs. Education plays another role in understanding the PC issue. In Iraq, as in many other regional countries, the health care system seems to be ill-equipped to deal with a dying cancer patient [6]. Parents continue to consult with health care professionals about the role of adding more chemotherapies to the treatment of their sick children with terminal malignancies and even sometimes refuse the use of strong analgesics, as this could be a sign of reaching the end of the story of their child, the death, which they do not want to believe. They, as well as many other health care professionals, cannot understand that PC helps improve the quality of life by decreasing the suffering of their terminally ill child. Discussing the eventual death of their patients could be understood as the physician’s failure to treat their patients. Awareness of one’s own culture, and the cultural practices of others, plays an important role in providing compassionate and competent care.

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System Barriers The health system in Iraq is fragile, and is now emerging from the disheartening period following many years of political sanctions and internal conflicts. There are significant disparities between developed and developing regions in the provision of PC services for individuals with life-­ limiting illnesses, particularly with regard to the awareness and attitude toward PC. There is a lack of awareness on the part of policymakers, and even many health professionals, of what PC is about and the benefits it can offer to patients and health systems. Other barriers to pain management include (a) the culture’s fear of opioid addiction; and (b) absence of government policies, education, and access to essential medicines (particularly opioids).

A Story from Anbar – West of Iraq Noor, from the west of Iraq (Anbar), was 12 years old when she was diagnosed with acute lymphocytic leukemia (ALL) in April 2010 and underwent treatment at CWTH for 2.5 years until August 2012. She abandoned follow-up after the al-Qaeda invasion in November 2013, followed by the presence of ISIS in her area. In July 2017, Noor presented with a relapse of the disease. Her family could not leave the city for medical advice and her vision deteriorated. One night in August 2017, her parent managed to escape from their city to reach CWTH in Baghdad, leaving four children behind. Noor refused treatment and said: I am blind, why should I receive chemotherapy treatment? Physicians working in CWTH convinced her that, although they cannot make her see again, they can help her to improve and to feel less pain. Financial support was offered to her family to rent a house. She was treated again at CWTH but, this time, she was blind. The parents were strong despite not knowing the fate of their children left behind. They stayed for several weeks, but unfortunately, Noor died from the progression of disease, away from her city, her brothers, and sisters. The strength of Iraqi community lies in the notion that friends and relatives will provide psychoso-

cial, spiritual, financial, and moral support to the patient and family.

Conclusion Eighty percent of people with cancer in low- and middle-income countries present with advanced stage disease [7]. In our setting, many cases presented with delay in referral, leaving patients and their families to struggle with the consequences of progressive illness. Distressing symptoms and severe pain have profound psychological impact on patients and their families. The integration of PC into a standard form, which provides evidence-­based guidance and recommendations for symptom management, emotional support, and stress management starting at the time of diagnosis through the treatment and coordination of care to the end of life, will provide a realistic solution to our problems. Exhibiting the disparities between developed and developing regions regarding the punctual recognition of cancer and other chronic diseases will help policymakers set their priorities. Finally, emphasis should be put on the importance of research in PC, increasing awareness and directing national healthcare policies and guidelines to increase government-­ sponsored programs for PC.

References 1. Islam SM, Purnat TD, Phuong NT, Mwingira U, Schacht K, Fröschl G.  Non-communicable diseases (NCDs) in developing countries: a symposium report. Glob Health. 2014;10:81. Published 2014 Dec 11. https://doi.org/10.1186/s12992-014-0081-9. 2. Al-Hadad SA, Al-Jadiry MF, Lefko C.  Paediatric cancer care in a limited-resource setting: Children’s Welfare Teaching Hospital, Medical City, Baghdad. Ecancermedicalscience. 2016;10:ed55. Published 2016 May 24. https://doi.org/10.3332/ecancer.2016. ed55. 3. Cleary J, Silbermann M, Scholten W, Radbruch L, Torode J, Cherny NI.  Formulary availability and regulatory barriers to accessibility of opioids for cancer pain in the Middle East: a report from the Global Opioid Policy Initiative (GOPI). Ann Oncol. 2013;24(Suppl 11):51–9. Available from https://doi. org/10.1093/annonc/mdt503.

The Current Situation of Palliative Care Services in Iraq 4. Rajgopal MR, Venkateswaran C.  Palliative care in India: successes and limitations. J Pain Palliat Care Pharmacother. 2003;17:121–8. 5. Jahan F, Al Shibli HS, Qatan RS, Al Kharusi AA. Perception of undergraduate medical students in clinical years regarding palliative care. Middle East J Age Ageing. 2013;10(2):22–31. 6. Ghali HH. Cultural challenges in implementing palliative care services in Iraq. Palliat Med Hosp Care Open J. 2017;SE(1):S19–23. https://doi.org/10.17140/ PMH-COJ-SE-1-105. 7. Cazap E, Magrath I, Kingham TP, et al. Structural barriers to diagnosis and treatment of cancer in low- and middle-income countries: the urgent need for scaling up. J Clin Oncol. 2016;34:14–9. Dr. Samaher Abdulrazzaq Fadhil  is a hematologyoncology specialist at Children Welfare Teaching Hospital/Medical City, Baghdad, with MD, FICMS and CABP (ped), FICMS (pediatric hemonc). She graduated from the Medical School, University of Al-Mustansiriya in 2000 and got a fellowship degree in pediatrics in 2009 and a subspecialty degree in pediatric hematology/oncol-

349 ogy in 2013. Her postgraduate training was at Children Welfare Teaching Hospital, Medical city. She got training opportunities in pediatric hematology/oncology in Jordan (KHCC) and USA (BCH/DFCI); her field of activity is neuroblastoma and neuro-oncology, and she has special interest in palliative care, spirituality, and medical ethics. Dr. Hasanein H. Ghali  is a consultant pediatric hematologist-oncologist at Children Welfare Teaching Hospital/ Medical City, Baghdad, with MD, DCH, FICMS (ped), FICMS (hemonc) graduated from Medical School, University of Baghdad in June 2002 and was assigned as a faculty member in 2003, got a fellowship degree in pediatrics in 2009 and a subspecialty degree in pediatric hematology/oncology in 2012. His postgraduate training was in Children Welfare Teaching Hospital, Medical city. He got training opportunities in Pediatric hematology/oncology in Japan (Shinshu Hospital), Jordan (KHCC) and USA (BCH/DFCI). Currently, he is an assistant professor of pediatric in the department of pediatric in Baghdad college of Medicine.

Part XXI Middle East: Israel

The Current Status of Pediatric Palliative Care at Home – The Israeli Perspective Sergey Postovsky and Myriam Weyl-Ben-Arush

Introduction Every year approximately 450–500 new pediatric patients are diagnosed with various types of cancer in Israel. The incidence of pediatric cancer is not uniformly distributed throughout the country and depends on the geographical region of Israel. Thus, the highest incidence is observed in the metropolitan area of Tel Aviv (180.2 per 1,000,000 of pediatric population up to age 19, whereas the lowest incidence was registered in the north of Israel with 150.8 cases per 1,000,000) (Fig. 1) [1]. In Israel today, approximately 80% of these children are regarded as long-term survivors and even cured. On the other hand, however, it means that approximately 90–100 children with cancer will ultimately succumb to their disease every year. There are six major pediatric oncology departments functioning within large hospitals in Israel: Ruth Rappaport Children’s Hospital located within Rambam Medical Center in Haifa; Hadassah Ein Kerem in Jerusalem; Dana Children’s Hospital integrated into Sourasky Medical Center in Tel Aviv; Safra Children’s Hospital within Sheba Hospital in Tel Ha-Shomer; S. Postovsky · M. Weyl-Ben-Arush (*) Pediatric Hematology Oncology and Bone Marrow Transplantation Division, Ruth Rappaport Children’s Hospital, Rambam Health Care Campus, Haifa, Israel e-mail: [email protected]; [email protected]

Schneider Children’s Hospital in Beilinson Medical Center in Petach Tikvah; and Saban Children’s Hospital within Soroka Medical Center in Beer Sheba. Along with these major medical centers, there are several smaller hospitals with small pediatric oncology units which provide oncology treatment to a relatively small number of children with cancer diagnoses. Although the number of childhood deaths each year may seem small, the emotional, social, and financial impact is extraordinary. In Israel, as in other Western developed countries, pediatric oncology patients who need palliative care (PC) at the end of life occupy the third place (after children with incurable genetic/congenital and neuromuscular disorders) [2]. The pediatric cancer patients who become subjects for palliative care services comprise only about 20% of all pediatric patients who need and receive PC from various providers [2]. Pediatric palliative care (PPC) in Israel exists and functions on three levels: • Hospital level • Community level • Pediatric hospice All these three levels of PPC are connected to and dependent on each other and deliver their services to pediatric oncology patients who spend most of their time at home after being regarded as incurable.

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Hospital Level

North 150.8

Haifa 168.5

Center 178.1 Judea and Samaria 147.9

Tel-Aviv 180.2

Jerusalem 168.8

South 169.1

Fig. 1  Childhood cancer incidence rates (0–19 years) in seven districts of Israel from 1998 to 2007

It is generally agreed that most people would prefer to die at home surrounded by close family members and friends, and it is logical to assume that children are not exempt from this general rule. Despite this assumption, we seldom witness the death of a child dying from cancer at home [3–5]. Among pediatric cancer patients who were followed and assisted by one of six major PPC services in USA and Canada, only 45.3% died at home. Others died either in hospital or in hospice facilities [2]. In a study evaluating the place of death of pediatric patients with complex chronic conditions in 11 different countries, it was shown that, in a majority of these countries, less than half the cases of children with cancer died at home [5]. In South Korea, for example, the percentage of children with cancer who died at home was extremely low (1.8%). A low percentage of pediatric cancer patients dying at home was also reported in the Czech Republic (17.0%) and in France (17.9%). In North America, the proportion of children dying of cancer at home is higher but still does not reach the 50% level (USA  – 39.4%, Canada  – 21.8%). In the study by Hakanson et  al. [5], there were only two countries that reported percentages of pediatric oncology patients’ deaths at home by more than 50% (Belgium – 60.8% and New Zealand – 52.6%). In Israel, an absolute majority of children with chronic and life-limiting conditions, including cancer, die in hospitals. There are several possible explanations for this. First, the nature of progressive cancer with its accompanying multiple symptoms, which are sometimes difficult to control, needs the hospitalization of a dying child [6]. Second, the immense psychological impact that imminent death poses for other family members may preclude keeping an ill child at home. Third, at times there are human, financial, and/or other shortages that limit or even completely preclude the possibility of managing the terminal phase of cancer in an ill

The Current Status of Pediatric Palliative Care at Home – The Israeli Perspective

child at home. Many families spend a significant part of time in pediatric oncology departments during the course of their children’s disease. It is a rule that during this time, which is measured usually by months and even years, tight and non-­ formal relationships are established between patients, their parents, and the departmental staff. Many families see pediatric oncology departments as their “second homes”. Therefore, it is understandable that many such families will decide to come to hospital when the child’s death becomes imminent and the psychological burden is great, despite the fact that there are proper conditions for ending the child’s life at home. It is also worth noting that Israel is a relatively small country where a majority of the population lives in several large urban centers with a well-­ developed health system including large hospitals. It means that practically all pediatric oncology patients with advanced and incurable cancer live within short distances of their corresponding pediatric oncology departments, making it is very tempting and easy to arrive at these facilities in the event of any crisis and, especially, when the death of a child with cancer becomes imminent.

Community Level Two models for providing PPC at the community level exist in Israel: • Medical insurance providers that have their own palliative care services – “home hospice” and “continuation treatment” units. There are four major such providers: Clalit (largest), Maccabi, Meuchedet, and Leumit (smallest). • External services provided by free-standing firms specializing in palliative care, such as “TSABAR” organization. All these palliative services have no specialists certified in pediatric palliative care. The only

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palliative care specialist who has been certified in PPC and works in such a capacity outside any hospital provides her services privately (freelance), mainly in the center of country. Summarizing all the above, PPC services in the community is provided by “adult” specialists without special knowledge and/or experience in pediatrics.

Pediatric Hospices There is only one dedicated pediatric hospice in Israel  – Beit Wiesel in Tel Hashomer (one hospice per more than 2.8 million children living currently in the country). This hospice is located within a large general hospital (Sheba Medical Center) and is designated only for children with cancer who were almost exclusively treated in that hospital [7]. Children with likely incurable cancer who receive oncology treatment are introduced to this place from the very early stages of their treatment and are supposed to become acquainted with the hospice from the very beginning. Therefore, beds in this hospice may both serve as hospital and hospice beds, depending on the stage of disease and goals of treatment. The children are treated by the same medical personnel (both nurses and doctors), irrespective of the stage of cancer. This makes it unnecessary to introduce new staff as the disease progresses, and palliative care is delivered by the same specialists who have long since become familiar with the child, his/her parents, and other family members. Such familiarity and well-established contacts that are created between PPC providers and an ill child and family become especially important at the end of life and facilitate better management of many problems which are encountered in a pediatric oncology patient as death approaches. There are several general hospices operating in Israel that potentially may provide palliative care for children with cancer at the end of life in

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their homes. Authors have described positive experiences in cooperation with the hospice of the Upper Galilee. The staff of this hospice provides palliative care to a variety of patients with different diagnoses across practically all age groups. The services of this hospice cover a large part of northern Israel, including population living not only in the upper Galilee as its name suggests, but in the whole territory of the Israeli Golan Heights as well. Close collaboration with this hospice has allowed us to successfully manage difficult symptoms of several of our patients in their homes until the very end of their lives. Rational organization and close collaboration between the medical staff of pediatric oncology departments and various PC providers at the community level frequently suffice to successfully manage complex problems in children with advanced forms of cancer. It has become common reality to manage pain in children at home, using not only orally or transcutaneously administered forms of opioids but to deliver parenteral morphine via patient- or parent-controlled analgesia, practically to every child after his/her condition is stabilized in a pediatric oncology department and she/he was discharged home for continuation of palliative care. It is also possible to arrange oxygen supply to patients with respiratory distress practically in all cases. Many patients receive a variety of nutritional support, including total parenteral nutrition while receiving PC at home. Such collaboration and involvement of medical and psycho-social staff at the community level optimizes maximally the time spent by the child and his parents at home, minimizes the duration of the hospital stay and, related to it, patient and family stress and associated financial and other costs. All this ultimately leads to improved quality of life, which becomes an especially important issue when the child is regarded as incurable and his/her death approaches. Hence, we can conclude that, despite that the absolute majority of pediatric cancer patients ultimately dying in hospital, many of them may spend a considerable amount of time at home during the last phases of their diseases, provided that adequate palliative care is properly delivered by medical and psycho-social staff at the community level.

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Before discharge of pediatric oncology patients with incurable cancer from hospital to their homes for continuation of palliative treatment provided by medical services in the community, we usually discuss with the parents the future probable situations when the general condition of their child will deteriorate, and there will be a need to decide whether or not resuscitative actions will be applied. During these discussions, we explore such issues as place of death and “do not resuscitate” (DNR) orders. If the parents are not interested in resuscitation and placement of their child in an intensive care unit, we provide them with a special letter that indicates that the family prefers not to perform resuscitation at home. This letter does not have any obligatory power and the parents may change their minds at any moment and just not show the letter to the ambulance team. In such cases, the child will undergo all necessary life-sustaining interventions according to his/her condition and will be delivered to the hospital. From the experience accumulated during several years of writing such letters, we may conclude that more than 90% of families prefer not to proceed to artificial ventilatory support or full cardiopulmonary resuscitation, but still the absolute majority of them prefer to spend the last hours or days in hospital in the pediatric oncology departments. Palliative care does not end at the time of the child’s death. Parental and other family members’ stress should be addressed properly to minimize long-term consequences of unattended and unresolved grief [8–10]. Although home visits by members of medical and psychosocial staff are not reimbursed by current regulations in Israel, in practically all instances when a child with cancer dies, representatives of the treating hospital team go to the deceased child’s home. Such visits facilitate better adjustment to the new reality for family members and help medical personnel deal successfully with their own stress and frustration. In conclusion, PPC in Israel is not comprehensive (it exists mainly at the hospital level and pediatric oncology departments). PPC in Israel is fragmentary geographically with scarcity of human, material, and other resources, especially

The Current Status of Pediatric Palliative Care at Home – The Israeli Perspective

both in the north and south of the country. Additionally, there is a lack of PC certified specialists (currently there are only three) who have certification in pediatrics. For better development of PPC at the home of children with advanced and progressive cancer, many improvements in such fields as continuous professional education and creation of financial mechanisms directed at a stimulation and reimbursement policy should be considered and implemented.

References 1. Rabinowicz R, Barchana M, Liphshiz I, Futerman B, Linn S, Weyl-Ben-Arush M.  Cancer incidence and survival among children and adolescents in Israel during the years 1998 to 2007. J Pediatr Hematol Oncol. 2012;34:421–9. https://doi.org/10.1097/ MPH.0b013e31826157ce. 2. Feudtner C, Kang TI, Hexem KR, Friedrichsdorf SJ, Osenga K, Siden H, Friebert SE, Hays RM, Dussel V, Wolfe J. Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics. 2011;127:1094– 101. https://doi.org/10.1542/peds.2010-3225. 3. Gao W, Verne J, Peacock J, Stiller C, Wells C, Greenough A, Higginson IJ. Place of death in children and young people with cancer and implications for end of life care: a population-based study in England, 1993–2014. BMC Cancer. 2016;16:727. https://doi. org/10.1186/s12885-016-2695-1.

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4. Feudtner C, Christakis DA, Zimmerman FJ, Muldoon JH, Neff JM, Koepsell TD. Characteristics of deaths occurring in children’s hospitals: implications for supportive care services. Pediatrics. 2002;109:887– 93. https://doi.org/10.1542/peds.109.5.887. 5. Håkanson C, Öhlén J, Kreicbergs U, Cardenas-­ Turanzas M, Wilson DM, Loucka M, et  al. Place of death of children with complex chronic conditions: cross-national study of 11 countries. Eur J Pediatr. 2017;176:327. https://doi.org/10.1007/ s00431-016-2837-0. 6. Postovsky S, Ben Arush MW. Care of a child dying of cancer: the role of the palliative care team in pediatric oncology. Pediatr Hematol Oncol. 2004;21:67–76. 7. Golan H, Bielorai B, Grebler D, Izraeli S, Rechavi G, Toren A.  Integration of a palliative and terminal care center into a comprehensive pediatric oncology department. Pediatr Blood Cancer. 2008;50:949–55. https://doi.org/10.1002/pbc.21476. 8. Lövgren M, Sveen J, Nyberg T, Eilegård Wallin A, Prigerson HG, Steineck G, Kreicbergs U. Care at end of life influences grief: a nationwide long-term follow­up among young adults who lost a brother or sister to childhood cancer. J Palliat Med. 2018;21:156–62. https://doi.org/10.1089/jpm.2017.0029. 9. Mulhern RK, Lauer ME, Hoffmann RG.  Death of a child at home or in the hospital: subsequent psychological adjustment of the family. Pediatrics. 1983;71:743–7. 10. Lauer ME, Mulhern RK, Wallskog JM, Camitta BM. A comparison study of parental adaptation following a child’s death at home or in the hospital. Pediatrics. 1983;71:107–12.

Part XXII Middle East: Jordan

Community-Based Palliative Care in the Arab Region: Current Status and Future Directions Loai Mohammad Abu Sharour, Huda Al-Noumani, Suleiman Al Sabei, Iman Al Hashmi, Maryam Al Harrasi, and Basma Al-Yazidi

Introduction Community palliative care is a main component in health systems. The complex care needs of older adults and people requiring palliative care are increasing due to the increase in life expectancy [1]. The rapid change in lifestyle in recent decades has left health-care systems unable to accommodate this gap and meet the care needs of older adults with chronic illness [2]. Palliative care is defined as relieving pain, managing associated symptoms, providing care during the dying process, offering psychological and spiritual care, and maintaining quality of life (QOL) [3]. However, it remains limited in the Middle East, which has Muslim-majority populations [1]. The meaning of community palliative care, access, national drug laws and regulations, the issue of addiction, knowledge deficit among health-care professionals, the structure of health-­ care systems and the perception of Muslim families toward palliative care are all factors that L. M. Abu Sharour (*) Faculty of Nursing, AL-Zaytoonah University of Jordan, Amman, Jordan e-mail: [email protected] H. Al-Noumani · S. Al Sabei · I. Al Hashmi M. AlHarrasi · B. Al-Yazidi College of Nursing, Sultan Qaboos University, Muscat, Oman e-mail: [email protected]; [email protected]; [email protected]; [email protected]; [email protected]

might limit the development of community palliative care in the Arab region. This chapter discusses community-based palliative care in Arab countries, the decision-­ making process, autonomy and disclosure of information, the role of palliative care nurses in the community, paediatric palliative care (PPC) and research on palliative care in Arab countries.

 ommunity-Based Palliative Care C in Arab Countries Nowadays, palliative care practice has shifted toward community-based palliative care. This change is thought to overcome challenges to palliative care and bridge the gap in practice between hospital care and community needs. Access to community-based palliative care has been linked to reduction in cost, utilisation of hospital and emergency departments, length of inpatient stay and unplanned admission, especially for patients requiring end-of-life care [4, 5]. One of the major barriers to optimal palliative care is a lack of home care services [6]. Palliative care in Arab countries is dominantly hospital-based and physician-led [7]. Currently, palliative care faces various challenges in its implementation by health care providers and the accessibility by the public [8]. Moreover, the infrastructure of Arab countries is not well-­ established enough to allow development of

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In 1995, through the National Cancer Control Workshop, Lebanon initiated its initiative toward palliative care by Professor Michael Silbermann and the Middle East Cancer. Since then, Lebanon has been working toward adopting and achieving gold standards and goals of palliative care, of which advancement of home-care palliative care and social assistance is one of the key emphases. In 2003, a symposium was conducted to highlight the role of community nurses in home-based palliative care. Recently, palliative care concepts have been introduced in undergraduate and post-­ graduate nursing education but palliative care, including community-based practice, is still not at the optimal level [8, 12]. In Egypt, the first initiative toward providing palliative care services was in 1981. Until recently, community-based palliative care has Status of Community-Based been a challenge in Egypt, and there is no well-­ Palliative Care in Arab Countries established system to provide community palliaIn Oman, there are two main cancer centres. tive care to the public taking into consideration Palliative care in Oman is still in its infancy stage, the large population of Egypt [8]. and the country is now in the process of palliative Until 2008, Palestine had no palliative care care capacity building. In 2012, an introductory facilities nor a community-based palliative care course on palliative care for community nurses system. In 2008, the first non-governmental initiawas started in collaboration with the United tive (Al-Sadeel Society) was begun to establish States Oncology Nursing Society in Pittsburgh palliative care at home and at the community level. (USA) [8, 12]. Approximately 24 community However, this initiative is based on volunteerism nurses have been trained to provide palliative only, in which nurses and other health-­care providcare at primary health centres, but not at a com- ers raise awareness about palliative care and its munity level [13]. significance at the community level [8]. In Jordan, the King Hussein Cancer Centre In Saudi Arabia, there is a well-developed sys(KHCC) started palliative care in 2004 and tem of inpatient care of patients with cancer at became the first comprehensive cancer centre in tertiary level hospitals. However, primary level the Middle East, providing cancer management settings and their networks have a poorly develand palliative care. The palliative care program at oped system providing palliative care with family KHCC has a home care program consisting of practitioners and community nurses [15]. In two teams led by community nurses, who con- 1990, Saudi Arabia piloted a community palliaduct home visits to provide palliative care to tive care nursing program with 12 patients who patients with cancer. Despite its huge services to were terminally ill. Community nurses, under the the country, home-based palliative care is limited supervision of referral hospitals, provided palliato Amman, the capital city, and to patients resid- tive care at home settings. In 1992, the King ing within a 100-mile radius [8, 14]. Currently, Faisal Specialty Hospital and Research Centre the focus of KHCC is directed toward shifting officially established a palliative care unit; this from hospital or hospice care to community-­ unit extends its services to home-based care for based palliative care for the adult population, and patients with cancer through its home care procare for the paediatric population as a home care gram [8]. In 2010, about 15 well-established service is not yet adequate [8]. ­palliative care centres were available in Saudi qualified community-based palliative care programs that could operate independently with the support of governmental and non-governmental sectors. Patients with cancer who require palliative care are commonly managed at emergency departments, outpatient clinics and inpatient palliative care settings [8, 9]. Arabs are characterised by an extended family structure. In their culture, Arabs prefer to care for their terminally ill relatives at home, and patients who require end-of-life care prefer to die in their own homes. Extending palliative care to community settings would be preferred by families, especially those in rural areas where access to palliative care is a challenge [10, 11].

Community-Based Palliative Care in the Arab Region: Current Status and Future Directions

Arabia with home-based services [12]. However, until recently, only patients living close to the centres could benefit from the home-based palliative care program [9, 12]. In Bahrain, the first official palliative care unit opened in 2010. The unit serves patients with cancer through follow-up clinics and hotline services. Palliative care has not yet extended to community or home-based care [12]. Qatar’s main cancer centre (Al-Amal Hospital) started its palliative care services in 2008. Qatar is another country where palliative care is in the process of capacity building, indicating that community-­based palliative care programs have not yet been established [12]. The United Arab Emirates started its first palliative care services in 2007 through Abu-Dhabi Tawam Hospital, and palliative care has yet to be extended to the community level [12]. In Iraq, despite the large number of cancer cases, palliative care has not yet begun, while Yemen and Syria were reported to be the two Middle Eastern countries without any known activities in palliative care [12].

 ey Components of Best Practice K in Community Palliative Care Community-based palliative care is an essential practice for extending palliative care from the hospital setting, where the majority of resources are available in the community setting, and where more coordination of care and qualifications of multidisciplinary professionals are required. Therefore, community-based palliative care should maintain the quality of palliative care practice in the community. The Table  1 below summarises key components of ensuring best practice in community-based palliative care [16–19].

Patients’ Priorities in Palliative Care There has been a great emphasis on key priority topics that should be available in every palliative care program. At the patient level, the following

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Table 1  Key components of best practice in community palliative care 1. Interprofessional teamwork with the right people on the team 2. Strong partnership and linkage between community health-care providers and other health-care organisations and hospitals to facilitate transition of patients’ care and medical records 3. Capacity building and training of community care providers regarding essential skills for palliative care, specifically pain and symptom management strategies under direct supervision of palliative care specialists 4. Holistic care approach that includes physical, psychosocial, spiritual, mental and end-of-life needs. This requires a competent multidisciplinary team with effective teamwork skills. 5. Continuity of care even outside of working hours 6. Presence of timely and responsive care in cases of crisis and exacerbation 7. Care coordination and transition between and among different sectors at the community, primary care and hospital levels 8. Proper identification of patients requiring community-based palliative care 9. Patient and family support/empowerment to make them important contributors toward high-quality palliative care 10. Appropriate care plan in the dying phase 11. Political support in implementing national and international policies related to community-based palliative care 12. Availability of safe environments, communication, transportation and care kit storage

priority topics need to be considered when assessing and evaluating hospital-based or community-­ based palliative care programs: pain and symptoms (e.g. nausea, vomiting, bowel obstruction, delirium, nutritional deficiencies) management, shared decision-making, patient and family support, reduction of despair and suffering, easy accessibility to human and community resources, continuity of care, availability of palliative sedation therapy and medical assistance in dying and end-of-life processes [20]. In Arab countries, these patient-related priorities should be highly considered for effective planning and c­ oordination of care and services, taking into consideration that community-based palliative care is still growing.

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Barriers to Community-Based Palliative Care in Arab Countries The literature among Arab communities has reported various barriers to the successful establishment of palliative care services in community settings. These barriers can be linked to individual communities, health-care professionals, organisations, or health policy and legislation. The following are barriers to the establishment of community palliative care: 1. Limitation of human, educational, infrastructural and financial resources supporting palliative care in some Arab countries [6, 12, 14]. 2. Limitation in funds allocated to palliative care programs, which affects the application of community-based palliative care programs. Limitation of funds could be related to under-recognition of the significance of such programs, leading to scarce distribution of resources. Additionally, the Arab region is still influenced by the Arab Spring, which was the reason for the instability, financial crises and insufficient development of the region’s infrastructure [14]. 3. Limitation in accessibility of palliative care medications (e.g. opioids) and specialists in particular settings, areas and even countries [9, 12, 14]. 4. Insufficient supply of equipment and medications [6]. 5. Lack of legislation, policies and regulations for palliative care [8, 12, 14]. 6. The majority of organisations providing palliative care at the community level are non-­ governmental organisations (NGOs) with limited support from the government [8]. 7. Unsatisfactory relationship between patients with cancer and their treating team [15]. 8. The palliative care community team is not well-supported in terms of constant training, education and resources which is the main reason for burnout. In addition, a lack of appropriate training and qualifications of community nurses creates a huge challenge to establishing a strong, well-organised

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community-­based palliative care system [6, 8, 10, 12, 14]. Providing the public with community nurses who are affiliated with community health-care providers or a cancer centre can minimise this challenge and ensure the provision of community-based palliative care services [6, 8]. 9. Poor coordination of care between community-­health nurses and hospital settings, which will influence the continuity of care in community settings [6, 8, 12, 14]. 10. The community lacks awareness of the meaning and importance of palliative care, specifically community-based palliative care [6, 8, 12, 14]. For instance, palliative care is generally misunderstood and confused with euthanasia, which makes it hard to accept palliative care in community settings. Additionally, people perceive that morphine is a medication used to facilitate euthanasia instead of improving QOL by easing pain [15]. 11. The culture could impose a barrier to home-­ based palliative care because, in some cultures, families (especially females) forbid health-care practitioners from entering their homes to provide care [6, 15]. 12. Death and dying are considered taboo subjects, and the public refuses to discuss issues related to death and dying [14, 15].

Coordination Services in Community-Based Palliative Care Shifting palliative care from hospital-based to community-based requires effective coordination services of the care. The implementation of successful coordination services between various entities (e.g. organisations, hospitals, hospice care, multidisciplinary health-care providers, community workers and volunteers, families and patients themselves) necessitates comprehensive planning and collective effort. Effective coordination of palliative care services at the community level: (1) is key to a successful multidisciplinary work, (2) reduces confusion and redundancy of patients’ care, (3) reduces role conflicts within the team, (4) improves com-

Community-Based Palliative Care in the Arab Region: Current Status and Future Directions

munication and (5) facilitates the provision of comprehensive care [20]. Well-established coordination services also have a great impact on care transition from hospitals to the community.

Future Direction and Recommendations In summary, palliative care is a growing field in cancer and end-of-life management in Arab countries. Currently, palliative care in Arab countries is hospital-focused, with less attention given toward community-based palliative care. To improve the services of palliative care in general and community-based palliative care in particular, significant attention should be given by governments of Arab countries to the following recommendations:

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7. Establishment of constant governmental and non-governmental funds to maintain a well-­ developed and qualified palliative care system to serve the community [8, 12]. 8. Development of national and/or regional policies and programs related to community-­ based palliative care [8, 12]. 9. Establishment of home and hospice care programs taking into account that some patients have limited access to palliative care services, while others have no palliative care programs provided in their countries [12]. 10. Strengthening the liaison between hospital teams and community nurses to improve palliative care provision in community settings [8].

 he Decision-Making Process: T Autonomy and Disclosure 1. The principle of palliative care should be high- of Information lighted as a main standard in postgraduate education programs, such as paediatrics, community nursing and family practitioners [8]. 2. Ongoing training programs need to be offered to health-care providers such as oncologists, community nurses, pharmacists and social workers [21]. 3. Enhancing community-based palliative care through the qualifications of a multidisciplinary health-care community team, including community nurses, to provide qualified and scientific palliative care [8]. 4. Supporting community nurses and other family practitioners to adopt a new palliative care model that focuses on preparing family members to be a functional unit to provide palliative care at home. This will strengthen the provision of quality palliative care at the community level [8]. 5. Establishment of educational and training programs for family caregivers and the public to empower care provided in areas where access to hospitals and community palliative care programs is inadequate [21]. 6. Increase governmental support toward NGOs to improve community-based palliative care [8].

Patients’ autonomy and self-determination are well-preserved rights in Arab communities. Patients have the right to determine the type and course of care that is best for them as long as they have the decision-making capacity [22]. When patients lack the capacity to make healthcare-­ related decisions, surrogate decision-makers give the necessary support [23]. However, the level of patients’ autonomy varies significantly around the nation, especially among patients requiring palliative care. The concept of ‘communicating bad news’ makes the decision-making process more complicated. As we live in a culturally diverse world, there are certain Middle Eastern societies that do not disclose the disease diagnosis or the prognosis to patients, especially if the patients are old, uneducated or at an advanced stage of cancer [24]. Findings from a study conducted in Saudi Arabia revealed that family members prefer withholding detailed information about patients’ cancer status and prognosis, as this information may result in fear and loss of hope [25]. As a result, the family often knows more about the diagnosis and treatment plan than the patients themselves [26].

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Studies indicate that the majority of patients prefer to be well-informed about their disease and want disclosure of related information [25, 27]. While, in Western communities, patients are usually the first to know and agree to the treatment plan, in many Middle Eastern communities patients prefer that their families be the first to know about the disease condition and to agree to the treatment plan [28]. Thus, health-care professionals should be aware of the socio-cultural aspects and accept different practices to preserve patients’ dignity and faith and provide high-­ quality care [29].

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analgesics is acceptable as a pain management strategy and can be tolerated from Islamic ethical perspectives. It is very important for the health-­ care providers to discuss the possible side effects, such as drowsiness, with the family members prior to administration [22].

 iew of Policymakers and Future V Direction of Palliative Care in Arab Communities

Access to palliative care should be part of the patient’s bill of rights. As the demand for palliative services is increasing worldwide, policymakers and health-care organisations should expand The Role of Family and Belief palliative care services and training in Middle Systems in the Palliative Care Eastern communities. Furthermore, access to palProcess liative care needs to be an explicit right for peoPatients’ culture, belief system and morals are ple to plan for their end of life. Raising community awareness about palliative fundamental aspects of their palliative care process. Although the need for comfort, dignity and care is highly recommended. Because patients and improvement in the quality of living at the end of their families are an integral part of the decisionlife are universal concepts, there are still unique making process, increasing their awareness about aspects of culture and religion that make the end-­ palliative care would help to make their decisions of-­life decision-making process vary from nation more informed. Arab communities should be eduto nation. In Arab communities, the family sup- cated that their treatment preferences can be exerport system plays a significant role in decision-­ cised using certain mechanisms, such as the making. Close family members are more often advanced directives and living wills. Although directly involved in palliative care decision-­ these documents are considered legal in several making. Parents, spouses and older children have Western countries, they are seldom used in Arab the greatest decision-making power compared communities [31]. However, to provide patients and their families with more autonomy, these docwith other members [30]. Another factor that plays a role in the pallia- uments should be given legal status. Because of the lack of palliative care laws and tive care decision-making process is the spiritual belief system. In Middle Eastern countries, Islam national policies and guidelines, health-care prois the dominant religion. Muslims believe that fessionals working in Muslim-majority countries having an illness represents an opportunity to might be more vulnerable to malpractice and liaexpiate personal sins and that there is a treatment bility charges [22]. Therefore, patient autonomy for every sickness. Yet, people should seek treat- should have an influence on the clinical practice, ment to relieve suffering. Such an attitude has an and policies should be developed for disease disimpact on how patients and their families make closure and proper information communication their end-of-life choice of treatment. For exam- between patients and their care provider [32]. In ple, unlike some Western countries, euthanasia is addition, health-care providers should be eduethically not an acceptable practice in Middle cated and trained to cope with patients’ sensitiviEastern countries. In addition, the use of opioids ties and different socio-cultural practices. The that affect consciousness is strictly prohibited. family-centred decision should be emphasised However, administering medically prescribed while providing palliative care for Arab patients.

Community-Based Palliative Care in the Arab Region: Current Status and Future Directions

 he Role of Community Nurses T in the Palliative Care Decision-­ Making Process Community nurses should collaborate with other health-care team members to provide comprehensive end-of-life palliative care. Nurses should establish a decision-making process that reflects patients’ preferences and religious and cultural values and addresses patients’ psychosocial needs. In Arab countries, families play a significant role in the decision-making process, so nurses need to attend to patients’ preferences and advocate for patient–family-centred care. Patients’ religious affiliation represents a key component of the value system and medical decision-­making, particularly in issues involving end-of-life decisions such as withholding or withdrawing of treatment, medical futility and do-not-resuscitate orders [33]. Awadaei, Almoosawi, Humaidan and Dovey (2019) interviewed 12 Western-educated Bahraini doctors whose medical practice often included end-of-­ life decision-making [34]. Participants revealed differences between their palliative care practice in Bahrain, a Middle Eastern country, and previous work in Western countries, recognising the influences of religious and cultural beliefs on their practice in Bahrain. In Middle Eastern communities, it is very common for Muslim patients to consult and seek guidance — formally known as a fatwa — from an imam regarding some medical treatments [35]. An imam is a knowledgeable person educated about Islam’s rules and regulations. Thus, health-care providers, including local and expatriate community nurses, should be sensitive to patients’ varying religious beliefs, local cultural values and ethical standards. Another important role of community nurses in palliative care decision-making is to assess and address psychosocial needs of patients, their families and care givers. Psychosocial care within palliative care is defined by the British Council for Palliative Care as being concerned with the psychological and emotional well-being of the patient and his or her family/care providers, including issues of self-esteem, insight into an adaptation to the illness and its consequences,

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communication, social functioning and relationships. Patients with terminal illnesses undergo a very stressful event. Hence, nurses should provide emotional support and facilitate spiritual support for patients and their family members [36].

 he Role of Palliative Care Nurses T in the Community In the community, the role of palliative care nurses can be divided into two primary roles: direct patient care and indirect patient care [37].

Direct Patient Care Besides conventional nursing care, such as assessment of symptoms, providing nursing interventions, medical treatment and health education [37], palliative care nurses provide direct patient care through a series of roles that include acting as a caregiver, counselor and psychologist, and therapeutic communicator. Caregiver  Nurses are the primary caregivers who spend most of their time with the patients. Whenever the patient cries out in pain, it is the nurse who responds immediately to ease the discomfort by providing either medical treatments, such as prescribed opioids without over-sedating the patient, or by educating the patient to manage pain using non-medical nursing interventions, such as relaxation therapies, distraction, massage and listening to the Quran. In the community, palliative nurses strive to understand the health issues from the standpoint of the patients and their families to provide culturally and religiously sensitive nursing care.

Counselor and psychologist  Community palliative nurses provide emotional support to terminally ill cancer patients and their families by acting as a counselor, psychologist and caregiver [38]. Whenever dying patients express their feelings, the nurses guide them using an effective

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therapeutic communication approach to alleviate their sufferings and emotional burden.

Therapeutic communicator  It is also the nurse’s role to encourage and support the patients to make an informed decision about their care towards the final phase of their life [38]. This would be achieved by communicating significant health information to the patient appropriately and on time. Nurses’ ethical communication of significant health information should be truthful and conveyed in a respectful, understandable and compassionate manner [36]. Moreover, it is expected of nurses to help their patients set realistic goals while providing genuine nursing care during the full period of their illness.

Indirect Patient Care In addition to the direct patient care roles, palliative care nurses provide indirect patient care by acting as a case manager and an advocate for the patient. Case manager  Palliative care nurses provide indirect patient care by working in collaboration with a multidisciplinary team such as physicians, social workers, dietitians and physiotherapists, where the palliative care nurses coordinate and oversee the care provided for the patient [38]. As the primary care provider who is available around the clock and takes care of the patient, the nurses appear as gatekeepers to the services provided by other health-care providers. In the community, palliative care nurses coordinate care provided to the patient to maintain continuity of care and to provide optimal care to dying patients.

Advocator  By profession, palliative care nurses are obligated to act as an advocate for the patient’s rights and ensure that the care provided by the multidisciplinary team members meets patients’ goals and preferences. Nurses spend more time with the patient than other health-care providers, and they establish a rapport with the patient and

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the family. Therefore, they are more aware of what the patient likes and dislikes, and they are more aware of the issues affecting patient care [36].

 linical Training of Palliative Care C in the Community In the Middle East, clinical training of undergraduate nursing students in palliative care is still lacking [39]. The majority of nursing programs in the Middle East do not incorporate palliative care in their core curriculum, and they rarely examine the students in it. Only a few nursing programs have integrated palliative care into their curriculum. These include programs in Lebanon and Jordan [12]. Lebanon started incorporating palliative care into nursing programs in 2000. Jordan has a well-established interdisciplinary program for the provision of inpatient, outpatient and community palliative care [12]. Given the increase in the incidence of cancer across Middle Eastern countries, preparing nurses to provide quality palliative care is of priority. Many governments in the Middle East started recognising the importance of national palliative care services, such as in Saudi Arabia, Oman, Qatar and the United Arab Emirates [12]. For example, Saudi Arabia has a well-established inpatient palliative care unit at King Faisal Hospital, and it is well-recognised as a training centre in the region. Moreover, in the Sultanate of Oman, the Ministry of Health celebrated the graduation of the first group of palliative care nurses (360 nurses) in 2018. The graduated nurses attended a three-year palliative care n­ ursing program at the national level. These nurses were trained to provide palliative care in various settings in Oman, including the community setting. The program was conducted under the umbrella of internationally recognised institutions, including the Middle East Cancer Consortium, the Oncology Nurses Society and the American Society of Clinical Oncology. This initiative started after a needs assessment in 2012 revealed the requirement to train a total of 360

Community-Based Palliative Care in the Arab Region: Current Status and Future Directions

Omani nurses in palliative cancer care to improve the QOL of cancer sufferers in the Sultanate. Since 2002, the palliative care services in Oman have been improving progressively, as evidenced by the provision of palliative nursing care in the National Oncology Centre [40].

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Paediatric Palliative Care (PPC)

Palliative care is a care method directed toward patients with life-threatening illness with a main goal of improving their QOL.  The same definition applies to children, but with more emphasis on integrating family-centred care, including family enabling and empowerment. Family enabling supports the family in caring for their Future Direction of Palliative Care chronically ill child with more independence, and family empowerment encourages the family to in Nursing Curriculum make sound decisions in matters related to their According to the World Health Organization, child’s care [41]. education is a priority for ensuring the effective Continuous family support and maximum implementation of cancer pain relief programs. It utilisation of resources available in the commuhas, therefore, been recommended that training nity are essential in PPC.  For effective PPC, a nurses and other health-care providers on pallia- multidisciplinary team comprising physicians, tive care generally and on cancer pain manage- nurses, social workers, child life specialists and ment specifically is essential to enable nurses to psychology therapists should be involved in the deliver a high standard of palliative care to termi- care. It is important to note that the definition of nally ill cancer patients. children in the health-care settings of most To provide high standards of end-of-life care, Middle Eastern countries is limited to children nurses must be well-armed with essential knowl- under the age of 13 years because of cultural and edge and skills to provide effective palliative religious considerations [42]. Children aged care. In addition, they must be well-trained to 13  years and older are transitioned to adult provide sympathetic and empathetic care to ter- health-care settings and are managed by adult minally ill cancer patients by working on their health-care teams. attitude and interpersonal competencies. These PPC is highly needed in the Middle Eastern include effective communication skills, under- region. According to studied estimates, 20 to 120 standing the health issues from the patient’s per- out of 10,000 children worldwide need palliative spectives, an obligation to provide holistic and care [43]. The rate of cancer among children aged culturally sensitive care to the patient, and a focus 0 to 14 years in the Middle East is 11.4% [44]. on improving the patient’s QOL while respecting Besides cancer, more than 35% of the total disthe patient’s beliefs, values and goals [38]. eases in the Arab region were related to congeniTherefore, integrating palliative care content into tal malformations and chromosomal anomalies, the nursing curriculum and considering inter-­ which require PPC. These morbidities reached an professional education of palliative care are alarming rate in the Middle East, which indicates urgent priorities. Also, emphasis on active learn- a need for critical attention to palliative care in ing strategies over passive strategies is essential children. to deliver palliative care education effectively. Furthermore, nursing students must be examined about their capabilities to provide palliative care; Challenges to PPC therefore, questions about palliative care should be included in the national nursing board exams. Children are a special group of people with needs Nursing education should be designed in a way that differ from those of adults, and so does their that prepares and trains nursing students to palliative care. However, palliative care in the deliver the best evidenced-based palliative care Middle East is mainly directed toward adults, as practices. no separate unit for PPC exists in the health-care

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settings of most countries in the Middle Eastern region [45]. Barriers to palliative care for children in the Middle East have been identified as a lack of policymakers’ support, limited financial resources and inadequate provision of palliative care medication [46]. In addition, PPC poses challenges to health-­ care professionals themselves. There is a lack of professional training in both knowledge and coping mechanisms. PPC is not adequately emphasised in academic curriculum and causes added emotional distress. Sadness, feelings of failure and emotional detachment while caring for children who need palliative care have been reported [47].

Community-Based Paediatric Palliative Care (CBPPC) Implementing PPC at home can be successful [48], particularly in the Middle Eastern region. People in the Middle East are overwhelmed by the family-centred culture and the social norms that undervalue the taking care of a terminally ill family member, especially children, by strangers. Parents of children with cancer in the Middle East have expressed needs such as wanting to know comprehensively about their child’s health condition, to meet other parents with similar experiences and to receive adequate support from family, friends and health-care providers [49, 50]. CBPPC provides an opportunity for parents to take care of their terminally ill child at home. It is a cost-effective and holistic approach to care that is shown to improve children’s QOL.  Research findings indicate that CBPPC has remarkably reduced hospital utilisation and related costs and has significantly improved the health-related QOL among children with life-threatening illness and their families [51]. In addition, it has provided an opportunity for a home death to a majority of the families desiring it [52]. Palliative care is characterised by flexibility, and different models can be incorporated while providing palliative care, such as a consultative model, a few-personnel floating model and a telehealth model [53]. PPC centres in the Middle East, which suffers from limited human and

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financial resources and delivers care to a community that values a family-centred care approach, can benefit more from CBPPC. Collaboration with specialty clinics like the oncology clinic and the genetic clinic through consultation, sharing of human resources from community health centres and utilisation of technologies such as telehealth have the potential for successful CBPPC implementation in the Middle East.

Research and Professional Associations Collaboration among Middle Eastern countries in palliative care for children’s research and training has started recently. The Middle East Childhood Cancer Alliance has initiated a collaborative study to provide demographic and clinical data on children with acute lymphoblastic leukaemia (ALL) in the Middle East. The study was published in 2014 and provided comprehensive information on patient, laboratory and genetic characteristics; treatment protocol; response to induction therapy; and complications and toxicity among children with ALL [54]. In addition, the Paediatric Oncology East and Mediterranean (POEM) Group was established in 2013 to share experiences, initiate cooperative trials and develop common strategies. The group works toward care optimisation of paediatric oncology patients through needs assessment, robust registries, health-care provider training, guidelines, quality control, public awareness and strategic policy [55].

 esearch on Palliative Care in Arab R Countries Palliative care research has become a worldwide concern [56] and an important indicator of sustainable development goals [57]. With many people immigrating outside the Middle East in recent years, palliative care for the Arabic population must be investigated. Nevertheless, in Arab countries palliative care research is at its foundational stage [58, 59]. In this section, we provide an

Community-Based Palliative Care in the Arab Region: Current Status and Future Directions

overview of the status of research in palliative care in Arab countries to assist researchers, funding institutions and policymakers in improving palliative care clinical advancements and outcomes. We conducted a systematic search in three databases (CINHAL, PubMed and Google Scholar) for each of the 22 Arab countries using the search terms palliative care and end of life care. Limits applied were academic articles and English language. The search was last updated on 30 July 2019. A total of 61 articles were located and reviewed.

 tatus of Palliative Care Research S in Arab Countries Scarcity of Literature Each year, an estimated 40 million people require palliative care globally; 78% of them reside in low- and middle-income countries [60], such as Arab countries. However, our search results showed that the literature on palliative care research in this area is scarce, indicating that the Arabic population is understudied. This may be partially due to the unavailable palliative care services throughout this area [61, 62]. It may also be due to restricted controlled palliative care medicine, inaccessible palliative care services and lack of health professional training [60]. Of note, we found one study conducted in the Netherlands on Moroccans and Turks living there, which found inconsistent use of the available palliative care services among these Middle Eastern nationals [63]. This suggests that availability and access to palliative care may not be the only barriers to palliative care services and research. The scant research output in this area may also be strongly linked to the low funding allotted for research in Arab countries generally and for palliative care research specifically. Numbers of published studies vary among the 22 Arab countries, as shown in Table 2. Lebanon has the highest number of palliative care publications (18 articles), followed by Jordan (13 article) and Morocco (seven articles). Eleven Arab countries have no palliative care publications. A good num-

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Table 2  Number of published palliative care research articles by country

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22

Country Algeria Bahrain Comoros Djibouti Egypt Iraq Jordan Kuwait Lebanon Libya Mauritania Morocco Oman Palestine Qatar Saudi Arabia Somalia Sudan Syria Tunisia UAE Yemen Total

Number of published articles (excluding comparative studies) 0 0 0 0 4 0 13 4 18 0 1 7 1 1 4 1 0 0 0 0 2 0 61

ber of comparative studies between countries were published that were not included in the table but were used in our overall appraisal [59, 64– 66]. A 2017 atlas of palliative care in the Middle East showed similar statistics to what we have presented here [61]. This indicates there is no significant increase in the number of published articles during the last two to three years. It is not surprising that most of these studies were published after 2010, indicating that palliative care research is fairly new.

Conceptual and Methodological Issues Due to the increasing burden of non-­communicable diseases and ageing populations, the field of palliative care continues to grow [67]. Many concepts and disease contexts related to palliative care need to be investigated, such as the concept of ageing and

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symptom management. Yet, almost all the studies conducted in Arab countries were focused on oncology palliative care only [64, 65, 68]. The focus of the published articles in the area of oncology palliative care was mostly on the perception of palliative care [69, 71], medication use [72] and symptoms [73, 74]. Other disease contexts that need palliative care were not studied, such as cardiovascular terminal illnesses (e.g. heart failure) and chronic obstructive pulmonary disease. A group of studies described the perception of physician nurses and nursing students’ knowledge and attitude toward palliative care [39, 69, 70]. The timing of initiating palliative care was investigated by only one study [75]. Other important concepts have not been examined yet, such as ageing. No epidemiological studies have examined the number of people in need of palliative care. More importantly to note is that the concept of palliative care was not clearly defined in the studies and has been used interchangeably with the concept of end-of-life care [76]. Although both concepts are similar, it may create confusion that palliative care is only used in terminally ill patients versus in any condition that requires pain control and comfort measures. From a methodological perspective, several issues were noticed across the appraised studies. Sample sizes were small in almost all studies, except for those conducted on students and healthcare professionals [69]. Nearly all studies reviewed were conducted on adult populations. Few studies were done on children [77–79]. In addition, we think that people living in rural areas have been overlooked in palliative care research in Arab countries. Moreover, studies were conducted in both inpatient and outpatient settings, but no studies have been conducted in community-­based settings [14, 39, 80]. Further, most studies used quantitative approaches, except for a few that used qualitative approaches [63, 81]. All the quantitative studies used a prospective cross-­sectional design.

 uture Directions for Palliative Care F Research Palliative care research is as vital as palliative care service itself. Quality, rigorous research is

needed to improve the lives of patients and families while advancing palliative care science. Proposed future areas of inquiry for researchers in palliative care may include advanced treatments (e.g. medications, other therapeutic interventions), epidemiology (e.g. underlying disease process, gender, age, multimorbidity, education of patients and families), self-care of patients, self-care of palliative care professionals, family caregiving and caregiver burden. More importantly, palliative care research should be directed to community-based studies, and special attention should be given to the difficult-to-reach populations, such as those in rural areas. Additionally, various research designs and approaches should be used to enhance the understanding of dynamics of palliative care. We recommend conducting more longitudinal studies to understand the effect of palliative care over time. Better representations of all age groups, gender and underlying diseases should be considered. Funding institutions and policymakers may enhance research in palliative care by allocating funds, scholarships and fellowships. In addition, ensuring that quality data regarding palliative care are recorded in hospitals’ electronic systems, such as the use of controlled substances, will enhance the accessibility of data for researchers to be used in studies and relevant scientific publications. Policymakers should also encourage cross-country and regional research collaboration to increase the understanding of palliative care through comparative studies. In addition, researchers worldwide should be supported and encouraged to examine how Arab immigrants use palliative services in the hosting non-Arab countries.

Conclusion Community-based palliative care programs in Arab countries are underdeveloped and require a collective effort to overcome initial challenges. A limited amount of literature focusing on community-­ based palliative care programs in Arab countries has been published over the last 20 years. Accordingly, there is limited information describing the status of palliative care at

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14. Shamieh O, Hui D. A comprehensive palliative care program at a tertiary cancer center in Jordan. Am J Hosp Palliat Med. 2015;32(2):238–42. 15. Gray AJ, Ezzat A, Volker S. Developing palliative care services for terminally ill patients in Saudi Arabia. Ann Saudi Med. 1995;15(4):370–7. 16. Meyers K, Kerr K, Cassel J. Up close: a field guide References to community-based palliative care in California. Sacramento: California Health Care Foundation; 1. Fearon D, Kane H, Aliou ND, Sall A.  Perceptions 2014. of palliative care in a lower middle-income Muslim 17. Brogaard T, Neergaard MA, Murray SA.  Promoting country: A qualitative study of health care professionpalliative care in the community: a toolkit to improve als, bereaved families and communities. Palliat Med. and develop primary palliative care throughout 2019;33(2):241–9. Europe. Scand J Prim Health Care. 2016;34(1):3. 2. Davidson PM, Phillips JL, Dennison-Himmelfarb 18. 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community levels. Attention should now be directed toward optimising palliative care services by focusing on community-based program.

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Part XXIII Middle East: Lebanon

The Physician’s Role in Running a Palliative Care Service in the Community: The Lebanon Experience Ramzi R. Hajjar

Introduction and Background Construct

distant future, as the relatively young masses move up the population pyramid. Lebanon is a diverse and heterogeneous counTo best understand the role of physicians in pro- try where politics, sectarianism, and party affiliaviding palliative care for cancer patients in the tion pervade most aspects of life, including the community in Lebanon, it is helpful to briefly medical establishment. Microcosms within the review the context in which palliative care is tiny nation can differ widely in religious pracpracticed. Demographics, case distribution, tices, economic privilege, and cultural norms, resource availability and conceptualization by essentially discounting the “one size fits all” the consumer (and provider) together determine approach to care. The recent economic collapse the nature and ultimately effectiveness of this still has further eroded the ability of physicians to fledgling specialty. The cultural milieu in which deliver effective and comprehensive medical palliative care is practiced differs in many ways – care, and services deemed “non-essential” are as will be discussed  – from Westernized coun- first to fall victim to the struggling system. tries on which our programs are structured and According to the World Bank, about 40% of whose models of care we strive to emulate, befit- Lebanese live in poverty. Healthcare services, tingly or not. which are increasingly being funded out-of-­ Lebanon, like the rest of the world, has expe- pocket, are beyond the reach of a rapidly increasrienced a demographic shift over the past few ing proportion of the population. It is imperative decades that has profoundly impacted the prac- that healthcare providers working in this environtice of medicine and the delivery of healthcare. ment have a solid understanding of the elements As the world population increased, life expec- that unite or separate different segments of the tancy in developed and developing countries has population, and are able to recognize and marginalso increased. Consequently, the absolute and alize their own personal biases if meaningful relative number of older adults has grown at an end-of-life care is to be offered. unprecedented rate. This demographic shift will Imbedded within this diversity, however, are particularly be felt in Lebanon in the not-too-­ certain generalizable truths, not least of which are the inexorable progress toward old age, the family involvement in care of loved ones and the R. R. Hajjar (*) steady descent of large segments of the populaDepartment of Internal Medicine, Geriatric Medicine Service, American University of Beirut Medical tion into poverty even as healthcare costs escaCenter, Beirut, Lebanon late. Today, it is estimated that just under 10% of e-mail: [email protected]

© Springer Nature Switzerland AG 2021 M. Silbermann (ed.), Palliative Care for Chronic Cancer Patients in the Community, https://doi.org/10.1007/978-3-030-54526-0_32

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the population is above the age of 65 years and 1.5% above the age of 85 years – a small proportion compared to Western Europe and the United States, but quite high regionally (Fig.  1). According to the World Health Organization (WHO), life expectancy lags only slightly behind that of developed countries, and currently stands at 75.1 years for men and 77.7 years for women [4]. It is projected that in 25 years, the number of Lebanese older than 65 will double, at which time one in five residents of this small Mediterranean country – with a current population of approximately six million – will be in the geriatric age group [1–3]. But with longevity comes chronic, costly, and serious illness, including many types of cancers, which the Lebanese healthcare system is ill-­ prepared to deal with. As elsewhere, aging is a major risk factor for many types of cancers and all-cause cancer incidence peaks at around age of 70 years (Fig. 2) [5, 6]. The number of new cases of cancer in Lebanon has increased steadily over the past decades, according to the National Cancer Registry of the Ministry of Health and the World Health Organization (WHO. In 2005, over

7400 new cases of cancer were reported in Lebanon, compared to 10,187  in 2010, and 12,238 in 2016 [6]. This worrisome trend is not entirely due to aging alone; expanded screening efforts and improved registration methods have likely contributed significantly. Nonetheless, the need for competent and effective end-of-life care in the community is immense and unmet [7]. Moreover, due to a high prevalence of cancer-­ promoting behavior (such as smoking) and apathy or aversion toward preventive care, many cancers present at an advanced stage when symptoms alert to the presence of disease and the only reasonable treatment option is palliative care [7, 8]. A comprehensive palliative care service clearly should not be restricted to terminal cancer patients, but in Lebanon referrals for end-of-life care are seldom generated from other services. In my experience at the American University of Beirut Medical Center, of 164 cases managed by both inpatient and outpatient care over the past 5  years, approximately 86% were above the age of 65 years and 74% were for management of terminal malignancies. This is in sharp

Growth of population over age of 65 years by region 30

25

20 Percent

MENA Lebanon

15

United States 10

Western Europe

5

0 1970

1990

2010

2030

Fig. 1  Growth of population over age of 65 years by region [1–3, 25]. MENA Middle East and Northern Africa

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Incident all-site cancer by age in Lebanon 2000

Incidence of cancer-all sites

1800

Male

Female

Combined

1600 1400 1200 1000 800 600 400 200 0 0-14

15-24

25-34

35-44

45-54

55-64

65-74

75+

Age (years)

Fig. 2  Incident cancer cases in Lebanon by age. All-case cancer excludes non-melanoma skin cancer. (Source: National Cancer Registry (Ministry of Public Health, NCR))

contrast to the United States, where over twothirds of hospice enrollees have non-malignant diagnoses, according to the Medicare Hospice Benefits report. Even so, by one estimate, less than 10% of patients with terminal malignancies benefited from palliative care services in Lebanon due to a deficiency of professionally trained providers, public awareness, and program availability and accessibility. Seven medical schools currently exist in Lebanon. The abundance of well-trained physicians, however, are poorly distributed and clustered mainly in big cities, and large rural areas are deprived of specialty care. Despite being a tiny country, the crumbling infrastructure and choking traffic congestion resulting from decades of mismanagement prohibit willing providers from completing home care visits in an efficient and constructive manner. In addition, third-party payers do not cover home-based primary and specialty care. For these reasons, it is not cost effective for most providers to deliver care away from their clinic or hospital practice. Centralization of tertiary and specialty care means that many individuals requiring palliative care expertise will receive it late, if at all.

The cultural forces that affect acceptance and utilization of community palliative care services are many and have been reviewed elsewhere [9–11, 25]. Some healthcare professionals do not view symptom management as a goal in itself. Instead they continue to focus on curable interventions, even as these measures become futile. Home care, therefore, becomes paramount to dereliction of duties. Some might even view the dying process as a failure of modern medicine. Interestingly, many patients or their families harbor these same thoughts. Consequently, an inordinate number of patients with life-limiting illness spend extended periods in the hospital receiving tertiary care that does not necessarily alleviate symptoms or improve quality of life. It is in this setting that physicians must carve out their role in the greater effort to assert themselves and the specialty of palliative care in the community at large. This unique construct offers both obstacles and opportunities. Done properly, and with the support of key stakeholders, the potential to build a culturally appropriate service from the ground up and integrate it into mainstream medicine is promising.

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have been studied and addressed independently, as though they comprise two separate aspects of the progression from disease management (curaWhen discussing the role of the physician in tive care) to terminal care. It has long been known community-based palliative care programs for that optimal care requires the palliative care specancer patients, there are actually two issues that cialist be enlisted early in the course of the disare being addressed: First, the role of the primary ease, as the primary care provider continues to physician  – the one making the referral  – who take an active role throughout the journey. Such a knows the patient best and has most likely estab- cohesive approach is empirically known to lessen lished rapport with him/her; second, the role of patient and family distress. However, a review of the palliative care specialist, who will oversee the the literature shows that it was only at the turn of end-of-life symptom management and transition this century that the interaction and interdepento death. The former  – the primary provider  – dence between these two key players began to be may be a family physician, internist, specialist, or studied in an organized manner. Publications on indeed the oncologist who diagnosed and man- interdisciplinary team dynamics in the home setaged early stages of the disease. The latter is the ting, and its effect on patients and their caregiver, palliative care consultant and his/her team with have seen somewhat of a surge in the past expertise in managing the physical and mental 20  years, but many gaps remain, particularly in distress experienced by a dying patient and their areas relating to cultural acceptance, community loved ones. When palliative care is delivered by a care models, and recruitment and training of perpalliative care specialist working alongside the sonnel in regions of limited resources. patient’s general practitioner, it is referred to as The three models of care that describe increas“specialty palliative care”. On the other hand, ing interdependence among generalists and palliwhen it is delivered by practitioners not formally ative care specialists are: sequential, parallel, and trained in palliative care, it is called “basic” or shared care. In the sequential model, care of the “primary palliative care”. The degree of involve- patient is virtually transferred in its entirety to the ment of either physician can be quite broad, rang- palliative care specialist after the terminal diagnoing from very limited participation to being the sis is made. This can result in a disconnect and key administrator of care [12]. In Lebanon, many sense of abandonment during a vulnerable period. factors determine how these roles are carved out, Patients with long-standing relations with their and how physicians’ roles evolve as the disease primary care provider have voiced concern that progresses. The primary care physician is gener- enrolling in palliative care with a “new doctor” ally viewed as being the professional best capa- means their trusted link to their general practitioble of providing comprehensive and continuous ner will be severed. This is not a misconception, care. When the doctor/patient relationship is unfortunately, as many physicians do not continue already established, issues of building trust and to follow their patients after referral to the palliamutual understanding essential to the therapeutic tive care specialist. Common reasons given by relationship are already present. This allows the providers include role encroachment and inexpegeneral practitioner to provide care to patients rience in managing dying patients. While many with life-limiting cancer in the context of an patients do not wish – in fact, fear – losing their established relationship [13]. However, the con- primary care provider, others welcome the expernection between patients with cancer and their tise of the palliative physician and views him/her primary physician begins to dissolve as the dis- as best capable of meeting the needs as the goal of ease progresses to an advanced stage, and is treatment shifts from curative to comfort care [14, largely lost by the time the patient needs end-of-­ 15]. These distinct views are mainly addressed by life care [14]. the parallel model of care. Historically, these two providers – the primary In parallel care, the primary care provider concare provider and the palliative care specialist – tinues to provide care and support to non-cancer

The Physician’s Role in Running a Palliative Care Service in the Community: The Lebanon Experience

medical problems (e.g., diabetes, heart failure, dementia) while the palliative specialist assumes the role of managing more complex symptoms and the dying process. There will undoubtedly be an overlap in the physicians’ roles, and the efficacy of this model is in part determined by the involvement of each provider. The dynamics can get complicated. As mentioned above, primary care providers may have an aversion to managing dying patients in the community due to inexperience, lack of resources and accessibility, and their clinical workload may curb availability for community visits. Similarly, the palliative care specialist, particularly in Lebanon, may be viewed (rightfully or not) by patients and their families as being intrusive or callous. They may be perceived as less capable of communicating the overwhelming end-of-life events as effectively as the primary care provider who has a longer history with the patient and has established an emotional bond. Patients receiving palliative care in the community may find it easier to continue to view their primary provider as “their doctor” as the scarcity of palliative care specialists limits their ability to do home visits and often functions by team member proxy. Many factors determine how patients view each provider, and to whom they gravitate. In our experience with patients in Lebanon receiving palliative care in the community, physician availability was consistently ranked as one of the top determinants of who ultimately leads the care. At times of uncertainty and distress, the ability to consistently and reliably connect with a physician has, in itself, remarkable therapeutic power. The shared model of care represents the highest level of involvement of both providers. It is generally accepted as the best approach to managing complex terminal patients, provided the elements necessary for a successful home care service are in place (which is not the case in Lebanon). The primary care provider is viewed as having an active role in discussing treatment alternatives, referring to the palliative care specialist and other services only when necessary. When appropriate, he/she will defer care to the palliative specialist as the leading expert in managing cancer symptoms, and jointly monitor

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effectiveness of interventions. Paramount to the success of the shared model of care is a functional interdisciplinary team that is conducted in an efficient and effective manner. Team challenges concerning role ambiguity, inadequate communication, interpersonal conflicts, remuneration, and work overload must be addressed and agreed upon at the onset. In an ideal community, public health programs should strive to achieve the shared model of care. This will require resources and is labor intensive. In reality, the type and model of care administered is determined by service availability, logistics, patient preference, and physician capability. Of these, the biggest obstacle, by far, is the availability of qualified palliative care providers, as will be discussed next.

 everaging the Palliative Care L Specialist for Community Care In 2004, the Lebanese Ministry of Public Health introduced palliative care as a patient’s right in the first article of the Law on “Patients’ Rights and Informed Consent” [16]. At that time, human resources and expertise were the main obstacles in implementing the law as it was intended. The law was mainly driven by oncologists with a vision for their patients to die with dignity and without undue suffering. A few years earlier – in May 2000  – the Lebanese Pain and Palliative Care Initiative was launched under the auspices of the Lebanese Cancer Society [17, 18]. Members included physicians from various specialties, nurses, and other health professionals who work with terminal patients. The objectives of this initiative, among others, were to: 1. Promote the development of palliative care services and increase awareness of palliative care at academic, clinical, and social levels. 2. Promote the implementation of existing knowledge in palliative care and train professionals involved in the care of patients with incurable and advanced disease. 3. Consolidate the efforts of professionals from various disciplines who study and practice the

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principles of palliative care (doctors, nurses, social workers, psychologists, volunteers, and others). 4. Address the ethical problems associated with the care of terminally ill patients, paying special attention to local cultural traditions and beliefs. 5. Strengthen home care agencies and social assistance programs. According to the CIA World Fact Book, the death rate in Lebanon is 5.1/1000 population, or over 30,000 deaths per year [3]. With only five formally trained palliative care specialists currently in Lebanon, it has become clear that caring for patients with life-limiting cancer will not be delivered primarily by fellowship-trained palliative care practitioners. Our role is to help all those who deliver terminal care become more adept in the principles of hospice and comfort care. The shortage of certified palliative care providers in Lebanon is not unlike what is encountered in other developed and developing countries, only more severe. It was particularly apparent in the field of oncology after the 2017 Clinical Practice Guidelines of the American Society of Clinical Oncology strongly recommended that all patients with an advanced cancer diagnosis receive palliative care early in the course of the disease, along with active treatment [19]. As public awareness of this specialty grew in Lebanon, so did the demand… and the inadequate supply. To be certain, the void has been filled by many committed and qualified individuals from various specialties and disciplines. In fact, some aspects of palliative care (such as pain- and other symptom-­management, discussion of code status and goals of care, and grief management) should be within the skill set of all clinicians taking care of seriously ill patients. Our duty as palliative care specialists is to facilitate the process by providing clinical pathways and algorithms to ensure that the quality of care meets standard guidelines. The dedication of those few clinicians who provide primary palliative care has sustained the momentum during this capacity-building phase. Despite their capable efforts, it is estimated that 5-10% of terminal can-

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cer patients that need palliative care in Lebanon actually receive it [18, 20]. The previously described models of care are contingent on the presence of functional community palliative care programs that can assume care at some point in the disease progression. When such a service is not available, an alternative approach is necessary. The involvement of general practitioners as palliative care providers has been gaining momentum worldwide, and can potentially address the increasing shortage in Lebanon. Therefore, by necessity (if not urgency), palliative care must be built into existing primary care systems in Lebanon by providing the tools to deliver quality palliative care to patients. This approach has been successfully developed (and replicated) in settings where it was integrated in existing primary care systems in the Western world [21]. Given adequate training, resources and access to specialist support, general practitioners should be capable of providing end-of-life care to most patients, with the palliative care specialist intervening in the most complex cases (Table 1). A big step forward in establishing the specialty in Lebanon was reached on May 4, 2011 with the creation of the National Committee for Pain Relief and Palliative Care (NCPC) by the Ministry of Public Health (MPH – Decree no. 1/486) [22]. The NCPC was chaired by the Director of the MPH. It consolidated the efforts of professionals from various disciplines and institutions committed to advancing the principles of palliative care. The efforts undertaken by this multidisciplinary committee were divided into four broad categories with specific objectives: 1. Education: • Recommend a core curriculum for the training of healthcare professionals with an emphasis on knowledge, attitudes, and skill development. • Recommend specialization trajectories for physicians and nurses. • Institute the importance of continuing professional education in the field as a requirement for recertification and licensure.

The Physician’s Role in Running a Palliative Care Service in the Community: The Lebanon Experience Table 1  Some of the benefits and obstacles of obtaining home palliative care from a general practitioner (primary palliative care) versus fellowship-trained provider (specialty primary care) in Lebanon. The severe shortage of professionally trained palliative care clinicians means that most patients will receive end-of-life care from primary providers, if at all Primary (basic) palliative care Benefits Established physician-­ patient trust and rapport already exists Continued management of preexisting and chronic conditions Decreased utilization of healthcare referrals and overall cost Clear and effective communication regarding the nature of the illness and possible trajectories towards inevitable death Referral to other specialties, including palliative care, when necessary

Obstacles Inexperience in managing dying patients Time constraints (due to busy office/hospital workload) Patient/family loss of confidence in provider when disease progression is unanticipated or rapid

Specialty palliative care Expertise in managing refractory pain and pain syndromes Expertise in managing complex illnesses with multiple refractory symptoms Support of interdisiplinary team members Access to community resources Addresses all dimensions of physical, psychological, social, and spiritual suffering Prepares and educates patient/family of possible disease trajectory and imminent death Decreased utilization of healthcare resources and agressive interventions Help to facilitate events after death at home, or transfer to appropriate setting (hospital) when death is imminent. Shortage of specialty-­ trained providers Time constraints (due to overextension of limited human resource) Additional unreimbursed cost to patient Lack of provider availability – functions via team member proxy Fragmented care if communication with general practioner is suboptimal Role ambiguity and leadership conflict

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• Develop strategies for public education and awareness in the field of palliative care. 2. Practice: • Develop national standards and competencies for pain relief and palliative care. • Implement strategies to engage professionals from different disciplines in the care process, such as the use of multidisciplinary care pathways. • Recommend models for service delivery such as home care and residential care and the use of palliative care teams in hospitals. • Develop mechanisms to empower the family and the patient to be actively involved in the care process, emphasizing the importance of family and patient-centered care. 3 . Research: • Develop national research priorities for the field of pain relief and palliative care that target gaps in treatment, knowledge transfer, education, and policy. • To recommend research methods to address the gaps in information related to pain relief and palliative care in Lebanon. 4 . Public Policy: • Promote legislation that ensures the availability and accessibility of opiates and the right to prescribe them. • Recommend strategies that will ensure the inclusion of interdisciplinary palliative care teams in the care process. • Develop models for cost allocation and reimbursement for pain relief and palliative care services. • Recommend the institution of pain relief and palliative care as integral parts of the healthcare system in Lebanon. One obvious, but unstated, benefit of the ambitious goals outlined by the NCPC was to train general practitioners to implement the p­ rinciples of palliative care, particularly in the community, where the need was dire. Training healthcare providers early in their career in essential skills such

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as communicating bad news, accepting the inevitability of death and dying, and reflecting on ethical implications of futile interventions bodes well for the future generation of providers. Each of the seven medical schools in Lebanon now include didactic sessions on end-­of-­life care in their core curriculum, but the quality and level of instruction remains inadequate despite having developed a national curriculum [23]. Evidence of the lack of training in previous years can be seen in the attitude of professionals toward the dying process. The inability, or refusal, of clinicians to discuss terminal issues with patients and their caregivers has become the prevailing medical culture. Most young physicians disengage in ambivalence and visible discomfort when faced with terminal patients for whom palliative care is the only reasonable approach. In a survey of 1205 practicing Lebanese nurses and physicians, only 19.1% of physicians reported routinely informing terminally ill patients about their diagnosis, although the majority of nurses and physicians (94% and 99%, respectively) believed that the terminal patient should be informed [18]. One-third of physicians (33%) said they do not inform patients of the diagnosis, and 37.7% said they would only do so if the family asked them to. This lack of communication creates a missed opportunity to initiate the palliative care process early and effectively. In another study of 126 medical students, three barriers to disclosing bad news were reported: fear of causing more distress to patients, family interference, and physician uncertainty [24]. Only 14% of students were given the opportunity to observe a senior physician disclose bad news to patients. To my knowledge, no students or residents are offered home visits as a routine part of their training. Most of their training continues to take place in tertiary care centers, and the pressing need for community support for older or terminal homebound patients is overlooked. Founding members of the NCPC continue to actively promote the cause of palliative care in Lebanon, but the subcommittees have recently been dispersed due to the economic, political, and security situation on the ground, as well as the relocation of various members. The shortage

of specialty-trained palliative care physicians is expected to grow. Currently there are no palliative care postgraduate training programs in Lebanon, and our dependence on well-trained generalists to address the need of community palliative care will persist in the foreseeable future. For many reasons, too few physicians-in-training are exposed to palliative care early and often enough to experience its rewards.

Conclusion There is an urgent need to expand community palliative care services in Lebanon in order to provide person-centered compassionate care for patients with life-threatening cancer. Most terminal cancer patients have no access to palliative care, and they face needless suffering and isolation during the end-of-life progression. It is estimated that less than 10% of patients that could benefit from palliative care in Lebanon actually receive it, and palliative care currently remains mainly hospital-based. The social and family structure in Lebanon supports the expansion of palliative care into the community. Home-based care is facilitated by the presence and involvement of the extended family and affordable domestic caregivers. With limited resources and trained specialists, the integration of community palliative care service into existing primary care systems has been proposed as a bridging measure [13]. When the doctor/patient relationship has already been established, issues of building trust and mutual understanding, which are essential to the therapeutic relationship, are already present. This allows the general practitioner to provide palliative care in the context of an established relationship, while the palliative care specialist provides clinical guidelines and algorithms to ensure that current standards of practice are being met. Thus, the palliative care specialist plays the role of a custodian who promotes education, training, acceptance, and collaboration for the specialty. He/she should function as an advocate among policymakers at the government level to eliminate regulatory obstacles. Care for most community patients with terminal needs should

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be managed by primary providers, while the palliative care specialist manages the most complex cases with refractory symptoms. Primary palliative care providers should be given the tools to be able to carry out this role comfortably and competently. Most important among these tools are education and training. Leveraging the expertise of the palliative care specialist in this manner allows for the rapid expansion of palliative care for home-based patients during this capacity-­ building phase.

References 1. Center for Disease Control and Prevention; National Vital Statistic System. http://www.cdc.gov/nchs/nvss. htm. Accessed 17 Nov 2019. 2. United Nations., Department of Economic and Social Affairs, Population Division World population prospects 2019: highlights (ST/ESA/SER.A/423). 2019. Accessed 20 Feb 2020. 3. The World Factbook, Central Intelligence Agency. http://www.cia.gov/library/publications/the-worldfact-book. Accessed 17 Jan 2020. 4. World Health Organization. https://www.who.int/ countries/lbn/en/. Accessed 20 Feb 2020. 5. Abu-Saad Huijer H, Saab M, Hajjar R. Palliative care for older adults: state of the art in Lebanon. Lebanese Med J. 2016;64(1):27–32. 6. Lebanese Ministry of Public Health, National Cancer Registry (NCR). https://www.moph.gov.lb/ en/Pages/8/19526/national-cancer-registry. Accessed Dec 20 2019. 7. Hajjar RR, Atil T, Al-Mandhar Z, Oudrhiri M, Balducci L, Silbermann M. Prevalence of aging population in the Middle East and its implications on cancer incidence and care. Ann Oncol. 2013;232(Supplement 7):vii11– 1124. https://doi.org/10.1093/annonc/mdt268. 8. Silbermann M, Arnaout M, Daher M, et al. Palliative cancer care in middle eastern countries: accomplishments and challenges. Ann Oncol. 2012;23(suppl 3):5–28. https://doi.org/10.1093/annonc/mds084. 9. Beernaert K, Van den Block L, Van Thienen K, Devroey D, Pardon K, Deliens L, Cohen J.  Family physicians’ role in palliative care throughout the care continuum: stakeholder perspectives. Fam Pract. 2015;32(6):694–700. https://doi.org/10.1039/fampra/ cmv072. 10. Mouhawej MC, Maalouf-Haddad N, Tohmé A.  Cultural challenges in imple-menting palliative services in Lebanon. Palliat Med Hosp Care Open J. 2017;SE(1):S15–8. https://doi.org/10.17140/ PMH-COJ-SE-1-104.

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11. Silbermann M, Fink RM, Min S-J, Mancuso MP, Brant J, Hajjar R, et al. Evaluating palliative care needs in middle eastern countries. J Palliat Med. 2015;18:1):1– 8. https://doi.org/10.1089/jpm.2014.0194. 12. Ramanayake R, Dilanka G, Premasiri L.  Palliative care; role of family physicians. J Family Med Prim Care. 2016;5:234–7. https://doi. org/10.4103/2249-4863.192356. 13. Murray SA, Osman H.  Primary palliative care: the potential of primary care physicians as providers of palliative care in the community in the eastern Mediterranean region. East Mediterr Health J. 2012;18(2):178–83. 14. Norman A, Sisler J, Hack T, Harlos M. Family physicians and cancer care. Palliative care patients’ perspective. Can Fam Physician. 2001;47:2009–16. 15. Ankuda CK, Patterson SM, Wingrove P, Bazemore AW.  Regional variations in primary care involvement at the end of life. Ann Fam Med. 2017;15:63–7. https://doi.org/10.1370/afm.2002. 16. Lebanese Ministry of Public Health, Patient Rights and Informed Consent. Mibisterial Decree no. 574, Feb 11, 2004. 17. Daher M, Tabari H, Stjernsward J, et  al. Lebanon: pain relief and palliative care. J Pain Symptom Manag. 2002;24:200–4. https://doi.org/10.1016/ s0885-3924(02)00463-3. 18. Huijer H, Dimassi H.  Palliative care in Lebanon: knowledge, attitudes and practices of physicians and nurses. Lebanese Med J. 2007;55:121–8. 19. Ferrell BR, Temel JS, Temin S, Smith TJ. Integration of palliative care into standard oncology care: American Society of Clinical Oncology Clinical Practice Guideline update. J Clin Oncol. 2017;35:96– 112. https://doi.org/10.1200/JCO.2016.70.1474. 20. Daher M, Estephan E, Abu-Saad Huijer H, Naja Z.  Implementation of palliative care in Lebanon; past, present, and future. Lebanese Med J. 2008;56: 70–6. 21. Quill TE, Aberneethy AP.  Generalist plus specialist palliative care--creating a more sustainable model. N Engl J Med. 2013;368(13):1173–5. https://doi. org/10.1056/NEJMp1215620. 22. Lebanese Ministry of Public Health, National Palliative Care Committee. Ministerial Decree no. 486, May 4, 2011. 23. Daher M, Doumit M, Hajjar R, Hamre R, Naifeh Khoury M, Tohme A. Integrating palliative care into healthcare education in Lebanon. Lebanese Med J. 2013;61(4):191–8. 24. Antoun J, Saab BR. A culturally sensitive audiovisual package to teach breaking bad news in a Lebanese setting. Med Teach. 2010;32(10):868–9. 25. Daher M, Hajjar R. Palliative care for cancer patients in Lebanon. In: Silbermann M, editor. Palliative care to the cancer patient, the Middle East as model to emerging countries. New  York: Nova Sciences Publishers, Inc; 2014. p. 125–40.

Palliative Care in Lebanon: From Inception to Implementation Myrna A. A. Doumit

Introduction Lebanon is one of the world’s smallest countries, with an area of 10,452 square kilometers. About four million people live in the country with over 80% living in urban areas. Since the end of the 15-year civil war in 1991, Lebanon has strived to reestablish its infrastructure. Over the same period, Lebanon’s statistics have progressed, with life expectancy at birth rising to 74–77 years of age. Lebanon is undergoing an epidemiological transition, where diseases of affluence – diabetes, heart disease, cancer, high blood pressure – have noticeably augmented, while diseases of poverty – infectious and communicable diseases – are decreasing but have not yet disappeared [1]. Over the past century, the world experienced a demographic shift that has had a substantial influence on the delivery of health care. Improvements in health care have been accountable for the most significant years-of-life gains. In the twenty-first century, the world expectations of life and death are different from those a century ago [2]. As the world population has augmented, life expectancy in both developed and developing countries has also increased. With aging, older people are at

M. A. A. Doumit (*) Alice Ramez Chagoury School of Nursing, Lebanese American University, Beirut, Lebanon e-mail: [email protected]

high risk of developing complications from non-­ communicable diseases (NCDs). In Lebanon, the number of people 65  years and older parallel those of the world. In 2015, Lebanon had the highest percentage of people aged 65 years and older (7.3%) in the Arab region and this number is projected to reach 12% by the year 2030 [3]. Subsequently, both the absolute and the relative number of older adults have increased at an unprecedented rate. This demographic shift will particularly be felt over the next few decades, as the relatively young population moves up the population pyramid and this change, as well, is expected to have its impact on the health care system [4]. Life expectancy in Lebanon lags only slightly behind that of developed countries, and currently stands at approximately 74  years for men and 77 years for women (as little as 50 years ago, it was 60 years). But with longevity comes chronic, costly, and serious illness, including many types of cancers, which the Lebanese health care system is ill-prepared to deal with. Aside from age-­ related degenerative disorders, aging is a major risk factor for many types of cancers. All-cause cancer incidence peaks at around age 70 [4]. The number of new cases of cancer in Lebanon has increased steadily over the past decade, according to the National Cancer Registry of the Ministry of Health and the World Health Organization (WHO). In 2004, almost 7200 new cases of cancer were reported in Lebanon,

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c­ ompared to over 9400 in the most recent report [5]. This worrisome trend is not entirely due to aging; expanded screening efforts and improved registration methods have likely contributed significantly. It is estimated that by 2030, the number of new cancer cases will approach 12,000. The high burden of non-communicable diseases (NCDs) and the rapidly aging population in Lebanon makes palliative care (PC) an indispensable element of health services necessary to ease the suffering of patients. According to a report published in 2017, an estimated number of 15,000 patients need PC services each year. This number is expected to increase due to a number of factors such as the aging population and the rise in NCDs [6]. The World Health Organization (WHO) has defined palliative care as an approach that “improves the quality-of-life of patients and their families facing the problems associated with life-­ threatening illness, through the prevention and relief of suffering by means of early identification, impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” [7]. The WHO launched a public health model as well as a guideline to governments for the implementation of palliative care on the national level. This model was adopted by Lebanon. A major response to this initiative was the creation of the National Committee for pain relief and Palliative Care (NCPC) by the Ministry of Public Health (MPH – decree No 1/486).

Historical Background Palliative care was first tackled in Lebanon in 1995 during a National Cancer Control Workshop with national health leaders and supported by the Ministry of Public Health and the WHO.  This workshop was subsequently followed by another symposium in 1999 on palliative care and ethics which was organized by the Lebanese Cancer Society and sponsored by the WHO. Afterwards, in the year 2000, the Lebanese Pain and Palliative care initiative was launched and started under the auspices of the Lebanese Cancer Society. The team was multidisciplinary in nature and the pur-

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pose was to educate physicians and nurses about palliative care and to develop post-graduate training programs for physicians and nurses who wish to develop and introduce palliative care into medical and nursing curricula. After this workshop, nine fellows from different universities were chosen and sponsored for training in the United States to become EPEC (Education in Palliative and End-of-life Care) Trainers. Following this initiative, a 12-hour undergraduate curriculum and a continuing education program were developed for medical students; a continuing education program on pain and palliative care was also implemented for practicing nurses and courses on palliative care were implemented for nursing students. In 2001, a symposium on pain and palliative care was organized and it yielded an increase in the number of patients receiving opioids; the morphine quota increased from 0.5 kg to 4.5 kg. National media was involved as well. The Ministry of Public Health introduced palliative care as a patient’s right in the First Article of Law 574 (on patients’ rights and informed consent) as a response to the Prague Charter [8] which states that: “Access to palliative care is a human right under the right to the highest attainable standard of physical and mental health”. Another milestone was achieved in 2006 when the law 673 was amended by extending the duration of treatment outlined by a single prescription for opioids from 15 to 30 days [9]. In 2011, the Ministry of Public Health officially established the National Committee for pain relief and Palliative Care with the mandate of developing national plans for research, education, practice, and policy related to palliative care. In 2013, the Ministry of Public Health recognized palliative medicine as a new specialty [10].

National Need for Palliative Care In Lebanon, the demand for PC services is expected to rise with the aging population and the high burden of NCDs. In 2015, Lebanon had the highest percentage of people aged 65 years and older (7.3%) in the Arab region and this number

Palliative Care in Lebanon: From Inception to Implementation

is projected to reach 12% by the year 2030 [3]. According to the national Pan Arab Project for Family Health (PAPFAM) survey, 75% of people aged 65 years and older reported suffering from at least one co-morbidity, where the leading causes of morbidity were hypertension (36.7%), heart disease (23.1%), and diabetes (21.4%) [ 3]. In addition, NCDs account for 91% of total deaths, with four types of NCDs accounting for the largest proportions of deaths: cardiovascular disease (47%), cancers (16%), chronic respiratory diseases (4%), and diabetes (5%) [1]. Moreover, children are less likely to receive PC [11]. A survey conducted among Lebanese nurses and physicians found that 98% of pediatric nurses and 100% of physicians reported the need for developing pediatric PC [12]. Furthermore, a study assessing the quality of pediatric PC for children with cancer in Lebanon found that management of distressing symptoms such as fatigue and difficulty sleeping was inadequate and focused mainly on treating symptoms such as pain and nausea [13]. Despite the latter, few patients who need PC receive the care they need. Furthermore, most PC services are provided in large cities and many patients cannot afford PC services [6]. Despite progress towards developing PC services in Lebanon, substantial challenges remain.

I ntegration of Palliative Care Services Within the Health Care System Years 2011 and 2013, respectively, witnessed major steps towards the implementation of palliative care within the health care system in Lebanon by launching the National Committee for pain relief and Palliative Care (NCPC) and recognizing palliative care medicine as a new specialty. The NCPC has defined for itself large-scale goals, and has merged the endeavors of professionals from different disciplines and institutions committed to enhancing principles of palliative care. The work undertaken by this multidisciplinary committee is divided into four large categories with explicit objectives:

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1. Education: • Recommend a core curriculum for the training of health care professionals with an emphasis on knowledge, attitudes, and skill development. • Recommend specialization trajectories for physicians and nurses. • Institute the importance of continuing professional education in the field as a requirement for re-certification and licensure. • Develop strategies for public education and awareness in the field of palliative care. 2. Practice: • Develop national standards and competencies for pain relief and palliative care. • Implement strategies to engage professionals from different disciplines in the care process, such as the use of multidisciplinary care pathways. • Recommend models for provision of services such as home care, residential care, and the use of palliative care teams in hospitals. • Develop mechanisms to empower the family and the patient to be actively involved in the care process, emphasizing the importance of family and patient-centered care. 3. Research: • Develop national research priorities for the field of pain relief and palliative care that target gaps in treatment, knowledge transfer, education, and policy. • Recommend research methods addressing the gaps in information related to pain relief and palliative care in Lebanon. 4. Public Policy: • Promote legislation that ensures the availability, accessibility, and prescription rights of opiates. • Recommend strategies that will ensure the inclusion of interdisciplinary palliative care teams in the care process. • Develop models for cost allocation and reimbursement for pain relief and palliative care services. • Recommend the institution of pain relief and palliative care as integral parts of the health care system in Lebanon [14].

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Unfortunately, the NCPC was not successful in implementing all the above recommendations. Despite significant strides, enormous challenges continue to defy the implementation of a holistic approach to palliative care. The primary concerns remain focused on funding, research, and public education.

Approaches and Barriers to Palliative Care Education and PC in Lebanon The National Committee for pain relief and Palliative Care took the initiative to advocate for integrating PC into nursing and medical curricula. Systemic reviews highlighted the advantage of including PC into health professionals’ curricula at the undergraduate level [15–17]. Currently in Lebanon, 100% of nursing schools included PC as an entity but with different levels of emphasis and different core curricula. However, only 29% of the medical schools have integrated PC into their medical curriculum, at various levels. The national education subcommittee developed a modular curriculum for training undergraduate medical and nursing students. It recommended a one-credit course on palliative care (21-hour modular curriculum) be integrated into undergraduate training and be a requirement by all faculties of medicine and nursing in Lebanon. However, this core curriculum has not yet been officially adopted [18]. Unfortunately, the lack of education in palliative concepts currently translates into a lack of understanding of palliative care in clinicians’ practices. Not all universities offer this concept with the same breadth and depth. Regrettably, this lack of minimal standardization is yielding to a discrepancy in the understanding and practice of the PC approach. One of the major barriers described in the Lebanese health system is the lack of communication skills to address end-of-life issues between health care workers and patients. There are a number of difficult conversations that doctors/nurses may need to have as a patient’s disease progresses. Usually health care workers try to avoid discussing sensi-

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tive subjects with patients due to the controlling and dominant family system that still prevails; this could also be due to the lack of proper skills in communicating these sensitive issues. It is important that doctors/nurses become skilled in conversing with patients and their family members so that they can be more fully informed about the illness and make appropriate choices for their individual circumstances and preferences. Furthermore, doctors in Lebanon are reluctant to refer patients to palliative care services as they do not understand and/or believe in the discipline. Another barrier preventing physicians from handing over care to another doctor is that they are working under a system that is guided by a fee-for-service structure and therefore have concerns regarding the loss of income [19]. The NCPC has also recommended the inclusion of questions on pain management, palliative care, and end-of-life care in all official examinations tests of doctors and nurses. Moreover, it also recommended to tie continuous education as a precondition for licensure renewal. This step was recently adopted by the Order of Nurses, and nurses were able to issue a law that makes continuing education mandatory in order to practice medicine in Lebanon. Unfortunately, specialization trajectory in palliative care for nurses and physicians are still not developed enough to meet the country’s needs. More emphasis is needed at the educational and practical levels. Public education and awareness about palliative care was one of the main objectives for the NCPC. Unfortunately, this step was not properly pursued and the majority of people of Lebanon still do not fully understand the importance of palliative care for quality-of-life. In most cases, they relate the idea of palliative care to end-of-­ life, which delays the request for palliative care and is still not culturally accepted. This is an important aspect that needs close follow-up as supply of service is based on demand. As long as the people of Lebanon are not aware of the real meaning of PC and its impact on their quality of life, surely, they will not request it as a mode of care. Therefore, the main plan is to include education and use media to disseminate the reality

Palliative Care in Lebanon: From Inception to Implementation

regarding the importance and need to start palliative care the moment the individual is diagnosed with a chronic condition [20].

Palliative Care and Practice (a) At the hospital level The WHO strongly calls for the integration of PC in hospitals, especially those involved in treating cancer and chronic diseases. Hospital-­ based PC can improve patients’ outcomes and symptom control, facilitate the discussion of patient’s goals of care, reduce their length of stay, and promote transition of care to the community. In addition, hospital-based PC can help health professionals working in other fields to engage in and learn about PC.  Hospital-based PC can be integrated in different ways: as an outpatient PC clinic; a PC consultation service for hospital inpatients; a PC day-care service; an inpatient PC unit; and as a PC outreach service [21]. Unfortunately, among the very few hospitals in Lebanon that were able to integrate palliative care into their system, many of them failed to continue. This letdown might be related to many factors, mainly financial, as most public and private insurance parties do not cover palliative care services. Lack of cooperation from physicians to refer patients to palliative care services may be due to a lack of understanding or belief in the discipline. They may also be concerned about losing their clients and, consequently, income. In addition, there is a lack of physicians specialized in PC. Advanced care planning as an essential concept in the implementation of PC has not yet been introduced into the Lebanese culture. Patients are completely protected by family members. Decisions regarding treatment modalities are rarely taken by patients, especially when the condition is related to cancer. Usually family members are the decision-makers in such instances and patients willingly follow. Patient/family factors that present a barrier to palliative care include denial in patients/family that often hope or believe that the prognosis is better than what they

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are told; they may have an unrealistic expectation of the disease’s response to treatment; lack of awareness. Misguided perceptions about PC among the Lebanese population is prevalent as well [22]. PC is associated with death and terminal diseases and is viewed as the last resort when all other treatment fails. The people of Lebanon, in general, closely relate palliative care to end-of-life. (b) At the primary health care level The first call to build the Primary Health Care (PHC) system in Lebanon dates back to 1977. Almost 20  years later, Lebanon held its first national conference on PHC.  This was subsequently followed by the development of the first National Strategy for PHC in 1994. Two years later, a comprehensive assessment of health centers and dispensaries in Lebanon was conducted to identify those able to provide PHC services. Between 1977 and 1992, the health care system was busy responding to the emergency needs of the country due to the war status that prevailed during this period. Despite the continuous improvement in the PHC services provided across Lebanon, the concept of palliative care is still lacking in PHC due to health care workers’ poor awareness and knowledge about PC and lack of the infrastructure needed for the implementation of this approach to care. The PHC system in Lebanon is not yet prepared to integrate the concept of PC into its services. This issue is related to lack of human and physical resources. The health care workers at the PHC do not have the educational preparation for providing PC. Special training sessions need to be planned and offered across the country’s PHC system. Moreover, the physical structure and processes of the PHC are not helping as well. For example, there are no pain specialists nor psychological assessments for chronic care patients. It would be very helpful to have a comprehensive assessment of the services, reevaluating and restructuring the actual needs of the population of Lebanon and not simply to offer what we can based on our current human and physical resources.

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Palliative Care at Patients’ Home There are currently two NGOs that provide palliative care at home for patients and do so free of charge. These two NGOs have played a major role in advocating for palliative care at the national level. They have also helped explain the concept of PC to patients and their families and raised physicians’ awareness for the need to initiate PC at the time of diagnosis. One of the NGOs was more involved with capacity building; they organized local training workshops for people working in PC to enhance their knowledge and build their skills. There is still a lot that needed to be done at the community level since the two existing NGOs are not able to cover all regions of Lebanon, nor to respond to all needs, due to financial and human resources constraints [23–24]. In order to enhance the practice of PC in Lebanon, it is important to promote a multidisciplinary approach to care. This approach could be nurtured by promoting the interprofessional education among the different health care workers. This approach to education for health care workers started to thrive in Lebanon, but not to the extent of influencing a change to current health practices. Another recommendation is to develop national standards and competencies for pain and palliative care which must be followed by physicians and nurses. Moreover, empowering patients and families and teaching them about their rights to patient-centered care would enhance the social acceptance of palliative care. The current NGOs which provide PC in Lebanon help seriously ill patients and their families with the objective to prevent and relieve suffering. They also try to maintain the best possible quality-of-life for patients despite the seriousness of their condition. Self-referrals and referrals from physicians are both acceptable for admission into the system, and an individualized interdisciplinary care schedule is planned. Home assessment visits are carried out by the PC nurse. Nurses practice in close collaboration with PC physicians who are part of the NGOs’ team and with the patients’ primary physician. The frequency of home visits is on an as-needed

basis and it may vary throughout the course of the disease. The PC team is usually available around-­the-­clock for emergencies. Clinical psychologists and clinical pharmacists are also available. The main restriction for the two available NGOs is that they are only able to function within the capital and are not able to meet the needs of far-away patients, although at times they do travel to remote areas for consultations and do follow-ups by phone. It is significant to highlight that PC services in Lebanon are provided free of charge. The two NGOs depend on fundraising in order to maintain the services they provide.

Research and Palliative Care Research in the field of palliative care in Lebanon is progressively developing; it remains, however, in its beginnings. Clinical approaches, overall, are still based on experience and trial and errors and necessitate to develop into evidence-based, emphasizing the importance of research in this field. Proper funding is required for palliative care research to develop and prosper. In order to improve palliative care research at the national level, multidisciplinary research groups must be developed; for this reason, it is important to train a good number of palliative care researchers and provide them with the support needed to work collaboratively [25].

Palliative Care and Public Policy Public policy is the authority that governs the development and advancement of palliative care in Lebanon. The Ministry of Public Health, in collaboration with the private sector, promoted legislation to facilitate the implementation of palliative care in hospitals and in the community, affording the availability, accessibility, and prescription rights of opioids. It also developed and embraced a model for cost reimbursement, encouraging the provision of palliative care at home [26]. The Lebanese Ministry of Public Health took a milestone step in issuing the decree

Palliative Care in Lebanon: From Inception to Implementation

1/447, which outlines criteria for the ­reimbursement of palliative care services. The decree defines coverage for both home and hospital-­based programs and provides a plan for a reimbursement structure that can be used by the National Social Security Fund (NSSF) and private insurers.

Conclusion For palliative care to thrive and grow it must be available, accessible, accepted, and provided with quality. Palliative care should be sufficiently available in hospitals, primary health care centers, and homes. This includes health care professionals and other health care workers trained in PC and essential palliative care medicines being made available. It should be integrated into mainstream health care so that psychological support and symptom control can begin from the time of diagnosis. Palliative care should be accessible to all people, regardless of their socioeconomic background, and should be provided along with bio-ethics, as there are often challenging decisions to be made regarding end-of-life care. Undoubtedly, the quality of care is a fundamental element and must be ensured through national standards. Despite all its economic and political constraints, due to the strategic partnership between the private and public health sector, Lebanon is moving towards refining and enhancing the palliative care system already established in the country.

References 1. WHO noncommunicable diseases country profiles 2018. Geneva: World Health Organization; 2018. License: CC BY-NC-SA 3.0 IGO. Accessed 23 Dec 2019. 2. Rao JK, Anderson LA, Smith SM. End-of-life is a public health issue. Am J Prev Med. 2002;2393:215–20. 3. Mehio AS, Rizk A, Kronfol NM. Aging in Lebanon: perils and prospects. Le Journal Medical Libanais. Lebanese Med J. 2015;63(1):2–7.

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4. Sibai A, Kronfol N. Country profile: older population in Lebanon: facts and prospects: Center for Studies on Aging A Publications; 2011. http://www.csa.org. lb/cms/assets/archives/2011/13%20country%20 profile%20elderly%20population%20in%20lebanon%20facts%20and%20prospects%20english.pdf. Accessed 23 Dec 2019. 5. Ministry of Public Health website: www.moph.gov. lb. National Cancer Registry 2016; Accessed 23 Dec 2019. 6. Soueidan S, Osman H, El-Jardali F.  K2P policy brief: integrating palliative care into the health system in Lebanon. Knowledge to Policy (K2P) Center, Beirut, Lebanon, July 2018 https://www.aub.edu. lb/k2p/Documents/K2P%20Policy%20Brief-%20 Palliative%20Care-August%207%202018.pdf. Accessed 23 Dec 2019. 7. World Health Organization. WHO definition of palliative care. 2018. Retrieved from http://www.who.int/ cancer/palliative/definition/en/. 8. Radbruch L, De Lima L, Lohmann D, Gwyther E, Payne S. The Prague Charter: urging governments to relieve suffering and ensure the right to palliative care. Palliat Med. 2013;27(2):101–2. 9. Daher M, Estephan E, Abu-Saad HH, Naja Z. Implementation of palliative care in Lebanon: past, present, and future. Le Journal Medical Libanais. Lebanese Med J. 2008;56(2):70–6. 10. Daher M, Doumit M.  Palliative care in Lebanon: current practices, and perspectives for the future. New  York: Palliative Care Vol 1, Nova Science Publishers, Inc; 2017. Chapter 21, p  307-316, isbn# 978-1-53612-084. 11. Osman H, Rihan A, Garralda E, Rhee JY, Pons JJ, de Lima L, et  al. Atlas of palliative care in the eastern mediterranean region. Houston: IAHPC Press; 2017. http://dadun.unav.edu/handle/10171/43303; Accessed 23 Dec 2019. 12. Abu-Saad HH, Dimassi H. Palliative Care in Lebanon: knowledge, attitudes and practices of physicians and nurses. Le Journal Medical Libanais. Lebanese Med J. 2007;55(3):121–8. 13. Abu-Saad HH, Sagherian K, Tamim H, Naifeh MK, Abboud M. Quality of palliative care in children with cancer in Lebanon. Le Journal Medical Libanais. Lebanese Med J. 2013;61(4):228–36. 14. Daher M.  Palliative Care in Lebanon: achievements and future. Human Health. 2012;20:14–7. 15. Ahmed N, Bestall JC, Ahmedzai SH, Payne SA, Clark D, Noble B. Systematic review of the problems and issues of accessing specialist palliative care by patients, carers and health and social care professionals. Palliat Med. 2004;18(6):525–42. 16. Centeno C, Rodriguez-Nunez A.  The contribution of undergraduate palliative care education: does it influence the clinical patient's care? Curr Opin Support Palliat Care. 2015;9(4):375–91. https://doi. org/10.1097/SPC.0000000000000169. 17. Chung HO, Oczkowski SJW, Hanvey L, Mbuagbaw L, You JJ.  Educational interventions to train

396 h­ealthcare professionals in end-of-life communication: a systematic review and meta-analysis. BMC Med Educ. 2016;16(1):131. https://doi.org/10.1186/ s12909-016-0653-x. 18. Osman H, Abboud M, El LZ, Ghusn H, Hanna J, Kanazi G.  Setting practice standards for palliative care in Lebanon: recommendations of the subcommittee on practice - National Committee for pain control and palliative care. Le Journal Medical Libanais. Lebanese Med J. 2013;61(4):199–203. 19. Doumit M, Abu-Saad Huijer H. Lebanese cancer patients: communication and truth telling. Contemp Nurse. 2008;28:1–2. 20. Daher M, Doumit M, Hajjar R, Hamra R, Naifeh Khoury M, Tohmé A.  Integrating palliative care into health education in Lebanon. Lebanese Med J. 2013;61(4):191–8. http://www.lebanesemedicaljournal.org/articles/61-4/review1.pdf. 21. World Health Organization. Planning and implementing palliative care services: a guide for programme managers. 2016. World Health Organization. https:// apps.who.int/iris/handle/10665/250584.

M. A. A. Doumit 22. Doumit M, Abu-Saad Huijer H, Kelley J.  The lived experience of Lebanese oncology patients receiving palliative care. Eur J Oncol Nurs. 2007;11:309–19. 23. Balsam. The Lebanese Center for palliative care  annual report 2018. 2018. http://balsam-lb.org/ wp-content/uploads/2018/04/Balsam-Annualreport-2018.pdf. 24. SANAD.  SANAD annual report 2018. 2018. Retrieved from http://www.anadhospice.org/wp-content/uploads/SANAD-Annual-Report-2018.pdf. 25. Abu-Saad Huijer H, Deeb ME, Ghusn H, Karam GE, Zeineldine S.  Palliative care research in Lebanon. J Med Liban. 2013;61(4):204–9. 26. Osman H. Lebanon’s Ministry of Public Health issues decree on reimbursement for palliative care; An historic step toward more humane healthcare. 2019. https://www.executive-magazine.com/economicspolicy/lebanons-ministry-of-public-health-issuesdecree-on-reimbursement-for-palliative-care.

Part XXIV Middle East: Palestine

Palliative Care for Palestinian Chronic Cancer Patients in the Community Mohamad H. Khleif

Introduction

time since the sick patients, along with their families, very often cannot carry the load of both the Millions of people around the world, principally physical and financial burden, as well as the emoin developing countries, endure great suffering tional stress that is associated with chronic disand economic hardship due to life-threatening ill- eases such as cancer. nesses such as cancer. According to a WHO Cancer is one of the leading causes of death global perspective, the key feasible alternative to both worldwide [3], and in Palestine [4]. these urgent needs is to improve quality of life by Approximately 70% of cancer deaths occur in developing an effective, low-cost approach for low- and middle-income countries, and up to palliative care service of good quality and cover- 50% of cancer deaths could be prevented by the age. The best way to do so, in countries with implementation of evidence-based strategies for strong family support and poor health infrastruc- cancer prevention, early detection, and manageture, is by home-based palliative care [1, 2]. So ment [3]. In Palestine, cancer is the second leadfar in Palestine, palliative care services are not ing cause of death, accounting for 15.4% (1863) yet integrated within the Palestinian health-care of all deaths. In 2018, there were 3102 new cases system. Response-based actions are taken by reported in the West Bank of Palestine, with an health-care providers to control symptoms of incidence rate of 117.7 per 100,000 [4]. Most patients with chronic diseases such as cancer, cases are diagnosed at the end stage of the disusually inside hospitals. In the community, the ease [5, 6]; this late diagnosis makes it difficult to conditions are much worse, as still no community-­ treat and resource cancer care, and results in poor based palliative care services are available. health-related quality-of-life for cancer patients In most cases, patients go from the hospital and a high financial burden on patients, their famback to their homes and rely mainly on their fam- ilies, and the health-care system. One study meaily’s help and care. Moreover, in most developing sured the health-related quality-of-life of countries there are either very few community-­ Palestinian cancer patients at as low as 42 points based hospices for cancer patients or none at all, on a scale of 100 [5]. On the other hand, the canas is the case in Palestine. It is believed that this cer incidence in Middle Eastern countries is prekind of situation cannot continue for too long a dicted to increase by 70% in the next 20  years  - greater than any other region of the world [7]. Also, the high mortality rate is an indiM. H. Khleif (*) cator of late diagnoses of cancer and highlights AL-Sadeel Society for Palliative Care for Cancer and the need for palliative care services for this Chronic Diseases, Bethlehem, Palestine

© Springer Nature Switzerland AG 2021 M. Silbermann (ed.), Palliative Care for Chronic Cancer Patients in the Community, https://doi.org/10.1007/978-3-030-54526-0_34

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p­opulation. Literature discusses that the first point for estimating the need for palliative care is the number of deaths [8], especially as the reported overall survival rate in less-developed countries is 30% [9]. Additional resources are necessary in order to deal with advanced diseases, especially in the absence of integrated palliative care services within the health-care system. Costs were highest for those who died in chronic-care facilities and lowest for those who died in the community at home [10]. Home-based end-of-life hospice care has the potential to lessen the demand for acute hospital care, emergency department visits and admissions, as well as to increase patient satisfaction and number of home deaths [11, 12]. In several studies, home-based hospice palliative care was found to be cost-effective and reduced the need for other health services. Those receiving palliative care had health-care costs that were one-third lower [12]. A study in Israel found home hospice care during the last 2  months of life to be less costly than conventional care [13]. Subsequently, there is a significant need for palliative care services in the Middle East, including Palestine [14]. A survey of countries in the region showed that 86% of respondents wished to learn more about palliative care, whereas the question of how to finance such teams was one of the main concerns among the health-care professionals and administrators surveyed [9].

Current Situation The rising financial burden of cancer care on health-care systems worldwide has led to the increased demand for evidence-based research to find ways to lower medical costs. 95% of stage four cancer patients in Palestine were undergoing expensive chemotherapy treatment, while their quality of life (QoL) was only 31% on a scale of 100 [5]. This shows the extremely deteriorated QoL of patients who are approaching the end of life, while maintaining expensive curative treatment modalities at hospitals, with no community backup, support, or care. A large proportion of the expenditure in Palestinian health care goes to

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expensive curative care outside the area [6], whereas a number of studies found that PC improves quality of life and lowers the costs of care to cancer patients and families [15, 16]. Nevertheless, most Middle Eastern cancer patients are not treated in the community. Home-­ based and hospice services must be sustained, as well as encouraging palliative care education [9]. This model of care is associated with additional benefits, such as increased patient and family satisfaction and choice, suggesting that cost alone may not be adequate to judge service delivery models [17]. There is a relatively low level of pain control, palliative care, staff training, and health facilities that care for cancer patients in Palestine. To the best of our knowledge, there are only three main centers for cancer care in the West Bank of Palestine, and only one non-governmental organization dedicated to palliative care. Unfortunately, there are no organized palliative care services in Palestine yet. As far as we know, there are no hospitals, community primary health centers, or home-based services available for cancer patients. In addition, there are no hospices or home hospice care available for such patients. Palliative care nursing is still underdeveloped in Palestine. Even so, there are new initiatives to establish palliative care in the country. A non-­governmental organization in Bethlehem, the AL-Sadeel Society for Palliative Care for cancer and chronic diseases, which was established in 2008, is the first palliative care society in the country. It focuses on spreading awareness about the importance of palliative care service and the need to integrate it within the health-care system. Its work includes follow-up on cancer and other chronic diseases at homes in the community on a small scale. This is done mainly by a small team of workers and based mainly on voluntary endeavors. One of their successful initiatives is the lending program of medical devices and equipment, which is trying to bridge the gap of the absence of such equipment provided by the governmental and private services. Some other programs are starting in the academic field either by integrating palliative care education within the

Palliative Care for Palestinian Chronic Cancer Patients in the Community

curricula or by establishing stand-alone courses and programs on both undergraduate and post-­ graduate levels. One master program is expected to begin by the end of 2020 in Bethlehem, which will have a major focus on palliative care.

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for public awareness campaigns in the community and throughout the mass media. Topics should include the importance of palliative care for better quality-of-life for cancer and chronic disease patients and end-of-life care needs. Societal and religious figures of the community need to be involved in order to identify any culWhat Are the Difficulties? tural or religious barriers, which may not necessarily be in line with the concept of palliative care Palliative care is not yet integrated within the itself, but to education in palliative care [20]. national health-care system in Palestine [5, 14, However, some cultural thoughts are positive 18]. The poorer QoL of cancer and chronic dis- when it comes to death and dying. Death is someease patients in the Palestinian community could how an acceptable event for many individuals, be due to the deteriorating socio-economic and from a religious view, as it is the path to mortal political situation in the country, as well as the life and happiness, as is the acceptance of associlack of professional and specialized care to sup- ated pain or discomfort as a means to cleanse port those patients. Challenges include insuffi- one’s sins. Inside this debate, many patients cient secured funds for organizations working in would respond that they prefer to die at home, the field, weak governmental support, limited even though when the time comes, they and their prioritization of palliative care by the policy mak- families run to hospitals and die there, mainly as ers, and absence of facilities for community-­ no services are available in the community to based palliative care and home care. Literature support these patients and families. shows that the main problems in the region are On the other hand, the community’s and proshortage of funding or governmental support and fessionals’ attitude toward the patients’ perceplack of awareness among the public, as well as tion of pain and their disbelief of the patients’ policy makers and professionals, concerning the complaint of pain hinders pain management in need for such services [14]. the community as well as in the hospitals. In Moreover, the national economy, strategic many Middle Eastern countries, moderate to planning, health-care policy formulation, and the severe pain appears to be controlled using mulsetting of national priorities are affected by the timodal therapy, including the usage of nonstepredominant geopolitical conditions, political, roidal anti-inflammatory drugs and limited geographical, and administrative fragmentations doses of injectable opioids [21]. In the of Palestine under occupation and barriers to Palestinian community structure, there is a culmovement; all these have damaging effects on ture of shame in admitting pain, especially in the health-care system [6, 19], mainly in the com- the masculine community, and the belief that munity and on the most vulnerable people resid- bearing pain makes one stronger. The fear of ing in areas remote from urban centers. addiction, fear of the limited available options, fear of complications, respiratory depression, fear of losing control, and the will to maintain  ommunity Involvement C the ability to communicate and be present with the people surrounding them, are some of the Attitude toward end-of-life care and palliative cultural barriers to better end-of-­life care and care is somehow unclear due to the limited num- pain management. Similar discussions can be ber of studies on the attitudes of the Palestinian found in literature, specific to the Middle communiity and population. Issues such as writ- Eastern region, debating the culture of taboo ing a will, choosing a health guardian, and peace- and the stigma of cancer and its pain, and citing ful death are not well-known, even amongst that people consider and accept pain as part of health-care professionals. There is an grave need the disease [20].

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Furthermore, the community usually tries to help chronic disease patients and their families. The community provides good emotional and social support in the event of illness and loss. The society in Palestine, like other Arab countries, is collaborative in their support to individuals in need  - emotionally, by giving them a sense of belonging, and even with financial assistance. Ultimately, these humanitarian endeavors are still limited and based on personal relationships and geographical boundaries; they cannot make up for the lack of community-organized palliative care services.

Community Professional Infrastructure Palliative care (PC) is still a new theme in Palestine. As such, new palliative teams are advised to begin at the bedside, to show everyone what they can do, to be available, and also to educate other staff members [20]. There are a few palliative care nurses in Palestine who are officially trained and certified, through a combined oncology and palliative care diploma program. These efforts are still in the early stages and need a lot of support on both national and international levels. However, the AL-Sadeel Society for Palliative Care provides a palliative care consultative model through a team of palliative care nurses and two social workers specialized in palliative care. This is done mainly by telephone, as there is very limited access to the patients’ homes. Approximately 200 patients were served by this team in 2018, according to the Society’s registry. The author would like to add that the Society succeeded in acquiring a scholarship from the American National Cancer Institute for one doctor to be specialized in palliative care for oncology patients in Israel. This doctor is now practicing in East Jerusalem hospitals with limited access to Palestinian patients due to the restrictions on the freedom of movement by the Israeli authorities. There are still no services such as hospices, geriatric homes, or home-nursing. There are, however, some unorganized and non official home care nursing services scattered throughout the centers of some urban areas, which are based

on personal contact with patients undergoing hospitalization. There are two privately owned centers in the West Bank of Palestine that provide private home care nursing services for direct out-­ of-­pocket payment [18]. A local study in the West Bank of Palestine showed that nurses had poor knowledge of palliative care [22]. Moreover, most health-care providers in Palestine who work in cancer units need training and education in providing patients with palliative care [23]. Palliative care requires competent practices which may be achieved through training programs, an essential part of standard cancer care. Of course, investments in human and logistic resources are needed [24].

What Can Be Done? Based on the findings from a recent study by the author, the quality of life of Palestinian cancer patients is very poor, especially for those in the advanced stages. Palliative care was found to demonstrate improved outcomes of care and save costs for the health-care system. Long-term palliative care service and the persistent work of the palliative care team is essential for success. The adoption of such cost-effective strategies by policy makers would appear to be a wise use of public funds. The study recommends further research on a broader scale and longer follow-up periods to reinforce similar conclusions [25]. On the other hand, the incidence of cancer in the Middle East is predicted to double in the next 10  years, more than in any other region of the world [26]. The Worldwide Palliative Care Alliance recommends that palliative care be integrated into countries’ health-care systems [27], as long as it is estimated that 80% of the adults requiring palliative care live in low- and middle-­ income countries [28]. Nevertheless, socio-­ cultural, ethical, and religious involvement are crucial to the palliative care initiation in the Middle East, due to the prevalence of religious observance and community structure [9]. Arguably, in order to develop palliative care teams in the Middle East, the most urgent task is to

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focus on the education of professionals [20]. Health professionals must be trained in palliative care, attend scientific workshops and conferences for professionals who are working in the field of cancer care, and palliative care education should be included within the curriculum of schools for health professions [18, 23, 29]. Cooperation and support from the Ministries of Health and Education, local cancer care centers, education bodies and international support are vital for success, extending to policy makers’ involvement and priority-setting on both national and international levels. Further recommendations include: providing support for patients with cancer and chronic diseases and to have palliative care and symptom-­ management facilities all over the country. Also, to ensure drug availability, especially adopting an essential drug list based on the international essential drug list for palliative care, to address the stigmatization of patients and, finally, to monitor systems for the proper practice and provision of oncology health services in the community and other health facilities. Regrettably, Middle Eastern countries still need governmental policies that recognize palliative care [30]. The successful example of the Al-Sadeel Society can serve as an inspiration for the initiation and adoption of palliative care models in Palestine.

Conclusion There is a desperate need for integrating palliative care into the health-care and communitycare systems in Palestine. The integration of cost-­effective community-based palliative care services will provide a solution to the burden on the health-care system and patients at the same time. Efforts need to begin by integrating palliative care into the national health plans and health education, training providers of palliative care at different levels (including community health workers, nurses, and physicians) providing good home-based care and institutions providing home care, and valuing competent palliative care science and culture within the community and nation.

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References 1. Sepulveda C, Marlin A, Yoshida T, Ullrich A. Palliative care: the World Health Organization’s global perspective. J Pain Symptom Manag. 2002;24(2):91–6. 2. Stjernswärd J, Foley KM, Ferris FD.  The public health strategy for palliative care. J Pain Symptom Manag. 2007;33(5):486–93. 3. WHO> Cancer. World Health Organization NCD Management Unit Cancer [Internet]. 2019. [cited 2018 Jan 27]. Available from: http://www.who.int/ cancer/en/. 4. MOH.  Health annual report Palestine 2018. Minist Heal PHIC, Heal Status, Palest 2018, July 2019 [Internet]. 2019.; Available from: https://site.moh. ps/Content/Books/fE4zsafxsjNVhJntidJnqnn EHUibMuC1NYu66TNEmoNUJ1ZxeRcCm3_ Iei1j8d4YesYKxRyEhD6PZqdxzBa4z91pIhALGXo DGEhlEIPai9X9O.pdf. 5. Khleif MH, Imam AM. Quality of life for Palestinian patients with cancer in the absence of a palliative-­ care service: a triangulated study. Lancet [Internet]. 2013 [cited 2018 Jan 17];382:S23. Available from: http://www.sciencedirect.com/science/article/pii/ S0140673613625957. 6. Husseini A, Abu-Rmeileh NME, Mikki N, Ramahi TM, Ghosh HA, Barghuthi N, et  al. Cardiovascular diseases, diabetes mellitus, and cancer in the occupied Palestinian territory. Lancet (London, England). 2009;373(9668):1041–9. 7. Stewart BW, Wild CP.  World cancer report 2014. World Heal Organ [Internet]. 2014:1–2. Available from: http://www.videnza.org/wp-content/uploads/ World-Cancer-Report-2014.pdf. 8. Higginson I. Health care needs assessment: palliative care and terminal care. In: Stevens A, Raftery J, editors. Health care needs assessment. Oxford: Oxford Radcliffe Medical Press; 1997. p. 1–28. 9. Silbermann M, Fink RM, Min S-J, Mancuso MP, Brant J, Hajjar R, et al. Evaluating palliative care needs in middle eastern countries. J Palliat Med [Internet]. 2015;18(1):18–25. Available from: http://online. liebertpub.com/doi/abs/10.1089/jpm.2014.0194. 10. Walker H, Anderson M, Farahati F, Howell D, Librach SL, Husain A, et al. Resource use and costs of end-of-­ life/palliative care: Ontario adult cancer patients dying during 2002 and 2003. J Palliat Care. 2011;27(2):79–88. 11. Chitnis XA, Georghiou T, Steventon A, Bardsley MJ. Effect of a home-based end-of-life nursing service on hospital use at the end of life and place of death: a study using administrative data and matched controls. BMJ Support Palliat Care. 2013 Dec;3(4):422–30. 12. Brumley R, Enguidanos S, Jamison P, Seitz R, Morgenstern N, Saito S, et al. Increased satisfaction with care and lower costs: results of a randomized trial of in-home palliative care. J Am Geriatr Soc. 2007;55(7):993–1000.

404 13. Shnoor Y, Szlaifer M, Aoberman AS, Bentur N. The cost of home hospice care for terminal patients in Israel. Am J Hosp Palliat Med. 2007;24(4):284–90. 14. Bingley A, Clark D. A comparative review of palliative care development in six countries represented by the Middle East Cancer Consortium (MECC). J Pain Symptom Manag. 2009 Mar;37(3):287–96. 15. Smith S, Brick A, O’Hara S, Normand C.  Evidence on the cost and cost-effectiveness of palliative care: a literature review. Palliat Med. 2014;28(2):130–50. 16. May P, Normand C, Morrison RS. Economic impact of hospital inpatient palliative care consultation: review of current evidence and directions for future research. J Palliat Med [Internet]. 2014;17(9):1054– 63. Available from: http://online.liebertpub.com/doi/ abs/10.1089/jpm.2013.0594. 17. Hodgson C.  Cost-effectiveness of palliative care: a review of the literature [Internet]. 2012. Available from: http://www.hpcintegration.ca/media/36290/ TWF-Economics-report-Eng-final-webmar7.pdf. 18. Khleif M, Dweib A.  Palliative care initiative in a developing country: using Palestine as an example. In: Silbermann M, editor. Palliative care: perspectives, practices and impact on quality of life –global view. New  York: Nova Science publishers; 2017. p. 345–54. 19. Physicians for Human Rights-Israel. Physicians for human rights-Israel [Internet]. Physicians for Human Rights-Israel. 2015. Available from: http://www.phr. org.il/phr. 20. Silbermann M, Arnaout M, Daher M, Nestoros S, Pitsillides B, Charalambous H, et al. Palliative cancer care in middle eastern countries: accomplishments and challenges. Ann Oncol J Eur Soc Med Oncol. 2012;23(Suppl 3):15–28. 21. Ben Arie E, Ali-Shtayeh M, Nejmi M, Schiff E, Hassan E, Mutafoglu K, et  al. Integrative oncology in the Middle East: weaving traditional and comple-

M. H. Khleif mentary medicine in supportive care. Support Care Cancer. 2012;20:557–64. 22. Ayed A. The nurses ’ knowledge and attitudes towards the palliative care. J Educ Pract. 2015;6(4):91–100. 23. Shawawra M, Khleif AD.  Palliative care situation in Palestinian authority. J Pediatr Hematol Oncol. 2011;33(Suppl 1):S64–7. 24. Meier DE, Brawley OW. Palliative care and the quality of life. J Clin Oncol [Internet]. 2011;29(20):2750– 2. Available from: http://www.ncbi.nlm.nih.gov/pmc/ articles/PMC3139393/. 25. Khleif M. Economic and clinical impact of a consultative palliative care model for in-patients with cancer in Palestine. Unpublished thesis. Hebrew University of Jerusalem; 2019. 26. Boseley S.  Global cancer surge fueled by alco hol, smoking, and obesity predicted by WHO.  The Guardian [Internet] 2014 Feb 4.; Available from: https://www.theguardian.com/society/2014/feb/03/ alcohol-sugar-smoking-fuel-cancer-surge. 27. Lancet T.  Palliative care: a peaceful, humane global campaign is needed. Lancet [Internet]. 2014;383(9916):487. Available from: https://doi. org/10.1016/S0140-6736(14)60166-5. 28. Connor SR, Bermedo MCS.  Global atlas of pal liative care at the end of life [Internet]. Who. 2014. 111 p. Available from: http://www.who.int/cancer/ publications/palliative-care-atlas/en/ 29. Khleif M, Dweib A.  Palliative care in Palestine. In: Silbermann M, editor. Palliative care to the cancer patient: the middle east as a model for emerging countries. New York: Nova Science publishers; 2014. p. 171–82. 30. Silbermann M.  Availability of pain medication for patients in the middle east: status of the problem and the role of the Middle East Cancer consortium (MECC): implications for other regions. J Palliat Care Med. 2012;02(06):3.

Part XXV Middle East: Turkey

Pediatric Palliative Care in the Community: The Turkish Experience Rejin Kebudi and Fatma Betul Cakir

Introduction PC is an approach that improves the QoL of patients and families facing problems associated with lifethreatening illness, such as cancer, by prevention and treatment of symptoms and side effects of the disease, by means of early identification, assessment, and treatment of pain and other problems, physical, psychosocial, and spiritual. For a patient diagnosed with cancer, PC should begin at diagnosis and continue through treatment, follow-up care, and the end-of-life. PPC is the art and science of child-focused, family-­ oriented, relationship-centered medical care aimed at enhancing quality-oflife and minimizing suffering. Pain and symptom control, care coordination, and end-of-life care are important components of PPC.

 evelopment of Palliative Care D in Turkey The health system reform in Turkey after 2002 (which coincided with the Health Transformation Program (HTP) that included universal health R. Kebudi (*) Pediatric Hematology-Oncology, Oncology Institute, Istanbul University & Istanbul Medical Faculty, Istanbul University, Istanbul, Turkey F. B. Cakir Bezmialem Vakif University Medical Faculty, Pediatric Hematology-Oncology, Istanbul, Turkey

insurance coverage and easy health service access) has enabled all children to be admitted to tertiary health centers for diagnosis and treatment free of charge, totally reimbursed by the government [1–3]. In 2009, the TMH launched a national cancer control program including cancer registry, prevention, screening and early diagnosis, treatment, and PC. Turkey has accelerated the education programs on PC for health-care professionals since this project [4]. The establishment of PC in Turkey and in the region has also been supported by the Middle East Cancer Consortium (MECC) [5]. PC training programs organized in collaboration with the TMH and MECC between 2004 and 2014 were attended by a total of 434 people [6]. In 2014, the TMH published guidelines entitled “Directives for PC Services Implementation Procedures and Principles” to regulate the standards of PC units established in hospitals and revised them 1 year later [7, 8]. The directives highlighted the importance of teamwork, including psychological, social, and spiritual support to the patients, while integrating PC provision for the patient and the family. The role and necessity of integration of family physicians and home care teams to the PC units were also emphasized. In 2011, the majority of almost 40,000 patients who received home care had neurological disease (45%), cardiovascular disease (21%), and other chronic diseases; only 4% had cancer [3, 9]. Thus, most patients with cancer had not received home care. The number of patients

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receiving home care increased to 760,645  in 2016; however, the number of cancer patients receiving home care was still inadequate [10]. After the new regulations for PC in 2015 [8], the number of PC units increased rapidly to 358 inpatient settings with a total of 4752 registered hospital beds in 81 cities by 2018 [10]. Although Turkey has reached about 50% of the PC beds as recommended by the European Association for Palliative Care for 1,000,000 inhabitants [10, 11], nearly all of them are hospital beds, since all these actively working PC units are inpatient units. There are only a few private outpatient hospices, but still no community hospice teams or specialized home PC teams designated for oncology or “hospital at home” organizations [10]. Although the number of PC units for adult patients increased rapidly after 2015, similar improvement did not occur in PPC.  Only four PPC units have been recently established, and these inpatient hospital services take care of non-­ oncology PPC patients. Although acceptance of regulations for the implementation of PC services is encouraging, no formal national regulation for PPC exists.

 he Current Status of Palliative Care T Among Pediatric Oncology Patients in Turkey Each year in Turkey, 2500–3000 new childhood cancer cases are expected [2, 9]. According to the Turkish Pediatric Oncology Group (TPOG) and Turkish Pediatric Hematology Society (TPHD) Registry initiated in 2002, about 2500–3000 new pediatric cancer cases are reported each year [2, 9]. In the previous decade, the majority of patients were diagnosed at quite advanced stages due to delay in diagnosis and late referral to oncology centers [9, 12]. However, in the current decade, there is a trend for earlier diagnosis of cancer due to improved awareness in the community, particularly among the health-care staff at primary level health-care settings. The health system reform in Turkey after 2002, which provided universal health insurance coverage and easy health service access, has enabled timely referral of all

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children to tertiary health centers for diagnosis and treatment, free of charge. The collaborative education program on “recognizing the signs and symptoms for early diagnosis of pediatric cancer and symptom management”, organized by the TPOG and the TMH, has been afforded to primary physicians and nurses in many different cities and emphasizes pediatric and medical oncology topics in the medical school curriculum; this has also supported the improvement in the last decade [2, 9, 12]. In 2010, the first PPC unit was established in the Oncology Institute, Dokuz Eylul University Hospital in Izmir, by a dedicated team [13]. The unit actually served both adult and pediatric cancer patients. Although still no actively working PPC unit exists for children with cancer in Turkey, almost all pediatric hematologists and oncologists all over Turkey provide some form of PC at their inpatient or outpatient oncology clinics by way of consultations with the related disciplines [9]. Only a few university hospitals have dieticians, physiotherapists, and psychologists working fulltime in the pediatric oncology units. In most centers, “consultations” are requested when necessary from psychologists, psychiatrists, dieticians, social workers, physiotherapists, algology units, or spiritual counselors who work at the hospitals or nearby hospitals. A collaborative training program has begun for spiritual counselors in Turkey [2, 9]. There are no professional art therapists employed in the pediatric oncology centers. An art therapist had worked voluntarily for over a year in two pediatric oncology centers, and her positive contribution to the children was immense [9, 14]. The primary physicians (the pediatric oncologists) and the oncology nurses working at the inpatient or outpatient services try to cover the role of the psychologist, social worker, and sometimes even the spiritual counselor in many centers; this may sometimes lead to a burn-out syndrome [15–17]. Nurses are in close contact with cancer patients at all stages of cancer, during treatment and at end-­of-­life, and they have more in-depth, day-to-day contact with the patient than the pediatric oncologist, which can be more proactive and innovative than the care efforts intended to maximize the health-related quality-of-life of

Pediatric Palliative Care in the Community: The Turkish Experience

children with cancer [2, 9, 15, 16]. In Turkey, there is no formal comprehensive PC curriculum in medical schools nor PC specialty/certification for physicians. PC continuing education for residents and doctors have improved. During the fellowship programs of medical or pediatric oncology specialties, there are few formal PC lectures in the curriculum. However, residents and fellows mostly learn PC while caring for these oncology patients during their hospitalization [2, 9]. A certification program for PC nursing was recently approved by the ministry of health [10]. Most nurses gain experience while working in the inpatient oncology clinic from more experienced nurses and pediatric oncologists/hematologists. PC training is increasing via an interdisciplinary care program in the inpatient clinics and via lectures and courses in national meetings. Oftentimes the relation between the health-care professionals and the children and their parents is very intimate or close. Good communication between the physicians and the parents promotes trust, from the time of diagnosis and throughout the continuing progressive stages of cancer; for terminal stage patients, this trust may even assist in their decision regarding where they choose to die [15, 16]. Most parents prefer to stay in the pediatric oncology ward in the hospital at the terminal stage, contrary to many countries in the Middle East [2, 9]. A few parents prefer home for the place of death.

 he Current Status of Palliative Care T Among Pediatric Non-Oncology Patients in Turkey In 2015, the first PPC inpatient unit in Turkey was established in Bursa in the north-west part of Turkey. Bursa is a socioeconomically developed city. The other three inpatient PPC units were established in April 2017 in Erzurum, which is in the north-east part of Turkey, in May 2017  in Mersin, which is in the south of Turkey, and in December 2018 in Izmir, which is in the west of Turkey. All of them are located in government training and research hospitals. Each PPC units has seven to 20 beds and five to 10 nurses. In

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three PPC units, the chief physicians are pediatricians, and in the fourth is an anesthesiologist trained in intensive care. There is health staff on call for 24  hours/day, 7  days/week. The PPC units have no outpatient clinics for the periodic follow-up of the patients, except for the one in Mersin. The chief physician at this unit established a very well-organized outpatient clinic for the periodic follow-up of these chronic patients. Thus, acute problems that the families have to cope with could easily be solved during the outpatient clinic visits. The primary aim of all these PPCs is to follow the children with permanent or progressive neuromotor disabilities with or without respiratory sequela, stabilize their medical condition, and prepare them for home care. The PPC staff is usually asked to treat children in the pediatric intensive care unit (ICU); however, patients from other departments of the same hospital, other hospitals, and from hospitals in other cities are also referred. The secondary aim of the PPC units is to educate mothers so that they can take care of their children who need complex health support measures such as BIPAP machines for home settings and to give psychosocial support to the patient and caregivers and to maintain a relatively good quality-­ of-­ life. There is no age limit for children; a neonate or an 18-year-old adolescent can be hospitalized as well at all PPC units. No PPC unit has cancer patient experience, except for the one in Bursa, where they followed one refractory acute leukemia patient who relapsed after an allogeneic bone marrow transplant and gave no response to salvage chemotherapies thereafter. The PPC team tried to support him and the parent palliatively at the terminal stage, but he died after a 15-day follow-up. In the PPC units, in addition to the care of the patient by the primary physician and the nurses, consultations with psychiatrists, psychologists, physiotherapists, social workers, dieticians, spiritual counselors, and other relevant subdivisions/ departments throughout the hospital occur as needed. At every PPC unit, the physiotherapists and the psychologists visit the patients and the mothers every day if needed. Dieticians, social workers, and other staff members visit the

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patients once a week. At the PPC unit in Mersin, when a new patient is admitted to the unit, the psychologists, physiotherapists, and social workers are all introduced to the family, and they welcome the patient and the family. Nurses have a very important role in all PPC units. They are at the core of the care for both the patient and the mother. They care for patient’s medical problems and are also responsible for the education of the caregiver, which is usually the mother. All the nurses are welltrained and experienced in the intensive care of the patient, including eye/nose/mouth/anal and wound care, any catheter, nasogastric tube, tracheostomy or percutaneous endoscopic gastrostomy care, if present. They perform all the care and educate the mother or other caregiver and supervise them during all steps of the care. The nurses also support the physiotherapy exercises (particularly respiratory and mobilization physiotherapy) that the physiotherapist teaches the mothers to do. Although the nurses are not responsible for the psychosocial or spiritual well-being of the patients and the mothers, they witness and share all good and bad things that they experience throughout the day; thus, they are actually the first health-care staff that determine the need for a psychologist, a spiritual counsellor, or the social worker [15, 16]. In many PPC units or hospitals for children, volunteers from non-­governmental organizations visit the patients and try to entertain them. The PPC unit in Izmir has recently published a palliative care book in Turkish (personal communication), and the same team established a one-day pediatric PC symposium that was held on 14 October 2019 in Izmir. The mean duration of hospital stay in the PPC units range from 10 days to nearly 1 month, closely related to the time to provide the technical equipment that the children need at home and to educate the mothers to take care of their children at home. The cost of most of the equipment and the medication drugs are reimbursed by the government. At the PPC unit in Erzurum, however, the mean duration of hospital stay exceeds several months due to insufficient electricity infrastructure, particularly in small

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towns and villages within and around Erzurum. For example, a child that needs a ventilatory support system may not be discharged if continuous electricity is not available in their town. The low socioeconomic status of the patients is also another factor; the houses are small and the families are crowded with no extra suitable room for the patient at home. The municipalities, with the support of the social services of the government, try to improve the infrastructure of electricity at these rural areas and some non-governmental organizations support families financially. Two other PPC units will be established in Ankara and in Kayseri in the upcoming months. Multidisciplinary cancer treatment and other specialized care in Turkey are quite advanced in comparison to most countries in the region. Patients with cancer from the Middle East, Balkan or Turkish-speaking countries in the northeast of Turkey, such as Azerbaijan and Kazakhstan, come to Turkey for an accurate diagnosis and/or treatment. There are also refugees coming to Turkey from neighboring areas of conflict [2]. According to government estimates, since the onset of the civil war of Syria in March 2011, over four million Syrians have come to Turkey [18]. Since the beginning of the crisis in 2011, Disaster and Emergency Management Residency (AFAD), an organization activated for crisis circumstances, promoted ordinary daily life, regular education facilities, and health services [2, 19]. In April 2013, Turkey established its first asylum law, the “Law on Foreigners and International Protection” regulating all proceedings for refugees living in Turkey [2]. Refugees with cancer can be treated at tertiary government and university hospitals free of charge. The patients usually have very advanced stage diseases at diagnosis, and therefore have poor outcomes [20]. The refugee children with non-cancer chronic diseases are also allowed to receive PC support at these PPC units. However, the duration of their hospital stay maybe longer in the event of insufficient home facilities such as crowded rooms at small houses or longer time to obtain home-type ventilation machines.

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Conclusion and Recommendations

Acknowledgments We extend our thanks to Yelda Çufalı, MD, the chief of the Pediatric Palliative Care unit at Bursa Dörtçelik Training and Research Government Palliative care is an approach that improves the Pediatric Hospital; Tuğba Güler, MD, and Nuri Alaçakır, quality-of-life (QoL) of patients and families MD; the chiefs of thePediatric Palliative Care unit at facing problems associated with life-threatening Regional Erzurum City Government Education and Research Hospital; Aydın Yücel, MD, the chief of the illness. PC should begin at diagnosis and con- Pediatric Palliative Care unit at Mersin City Government tinue through treatment, follow-up care, and the Training and Research Hospital; and Nilgün Harputluoğlu, end-­of-­life. PPC is the art and science of child-­ MD, the chief of the Pediatric Palliative Care unit at focused, family-oriented, relationship-centered Behçet Uz Training and Research Government Pediatric Hospital for their valuable contribution.

medical care aimed at enhancing quality-of-life and minimizing suffering. Pain and symptom control, care coordination, and end-of-life care are important components of PPC.  Depending on the resources, PPC may be imbedded in the related clinic or may be in separate inpatient PPC units, inpatient, or outpatient children’s hospice services; also, there should be dynamic local community or hospital-based specialized PPC home care teams for children with cancer. PPC providers should all respect traditional and cultural diversities. A national PPC network among PPC units would be very helpful, so that patients could be transferred when there is no available bed at a center. Guidelines for PPC should be prepared, the standard/minimal requirements of a PC unit should be established and future strategies should be planned. Inpatient PPC units and teams (acute) or inpatient pediatric hospices (chronic) should be established for the purpose of both acute problems of the patients that could be resolved in a limited time or for end-of-life care for the incurable cancer patients. All four PPC units now in Turkey take care of acute problems of the patients but sometimes are a place of death of the patients. Although there are local home care medical teams in the Ministry of Health, most of them are not experienced in PPC. PPC should be included in the national health policies, as well as the education of health-care workers, and public PC service provision should be seen as a priority. Scientific organizations and Societies for Pediatric Oncology, Pediatric Hematology, Pediatric Intensive Care, Perinatology, and other related disciplines should collaborate to improve PPC in the community. PPC should be included in the curriculum of both medical schools and nursing schools.

References 1. Atun R, Aydın S, Chakraborty S, et  al. Universal health coverage in Turkey: enhancement of equity. Lancet. 2013;382:65–99. 2. Kebudi R, Cakir FB. Cancer care in a country undergoing transition: Turkey, current challenges and trends for the future. In: Silbermann M, editor. Cancer care in countries and societies in transition. New  York: Springer; 2016. p. 193–208. 3. Kebudi R, Cakir FB.  Cultural challenges in implementing palliative services in Turkey. Palliat Med Hosp Care Open J. 2017;SE:S10–4. 4. Ozgul N, Gultekin M, Koc O, et al. Turkishcommunity-­ based palliative care model: a unique design. Ann Oncol. 2012;23(Suppl. 3):76–8. 5. Silbermann M, Arnaout M, Abdel Rahman Sayed H, et  al. Pediatric palliative care in the Middle East. In: Knapp C, Madden V, Fowler-Kerry S, editors. Pediatric palliative care: global perspectives. Amterdam: Springer Science Business Media B.V; 2012. p. 127–59. 6. Hacıkamiloglu E, Utku ES, Cukurova Z, Keskinkilic B, Topcu I, Gultekin M, Silbermann M. Community palliative care in Turkey: a collaborative promoter to a new concept in the Middle East. J Public Health Manag Pract. 2016;22:81–8. 7. https://dosyamerkez.sağlık.gov.tr>4297.palyatif-­ bakim-­yonergesi.doc. Last accessed on 10 Dec 2019. 8. https://www.saglikaktuel.com/d/file/palyatif-bakimhizmetleri-yonergesi.pdf. Last accessed on 10 Dec 2019. 9. Kebudi R, Cakir FB, Gultekin M.  Palliative care to the cancer patient in Turkey. In: Silbermann M, editor. Palliative care to the cancer patient: the Middle East as a model for emerging countries. New York: Nova; 2014. 10. Oguz GT, Silbermann M.  International palliative care: update on Turkey’s experience on developing community palliative care programs. J Fam Med. 2019;6(4):1172. 11. Radbruch L, Payne S, the Board of Directors of the EAPC. White paper on standards and norms for hospice and palliative care in Europe: part 2 recommendations from the European Association for Palliative Care. Eur J Palliat Care. 2010;17:22–33.

412 12. Kebudi R.  Pediatric oncology in Turkey. J Pediatr Hematol Oncol. 2012;34:S12–4. 13. Mutafoglu K.  Current palliative care practice in a university hospital. J Pediatr Hematol Oncol. 2010;32(suppl. 1):S36–8. 14. Kebudi R, Ozcan A.  Understanding psychological states of children with cancer: art therapy as a communication tool. Psycho-Oncology. 2011., (abstract AA-3).;20(Supp):83. 15. Bar-Sela G, Schultz MJ, Elshamy K, et  al. Training for awareness of one's own spirituality: a key factor in overcoming barriers to the provision of spiritual care to advanced cancer patients by doctors and nurses. Palliat Support Care. 2019;17(3):345–52. 16. Bar-Sela G, Schultz MJ, Elshamy K, et  al. Human development index and its association with staff

R. Kebudi and F. B. Cakir spiritual care provision: a Middle Eastern oncology study. Support Care Cancer. 2019;27(9): 3601–10. 17. Alacacioglu A, Yavuzsen T, Dirioz M, Oztop I, Yilmaz U.  Burnout in nurses and physicians working at an oncology department. Psycho-Oncology. 2009;18:543–8. 18. https://multeciler.org.tr/turkiyedeki-suriyeli-sayisi/. 19. Ben-Arye E, Bonucci M, Daher M, et  al. Refugees in conflict: creating a bridge between traditional and conventional health belief models. Oncologist. 2018;23(6):693–6. 20. Kebudi R, Bayram I, Yagci-Kupeli B, et al. Refugee children with cancer in Turkey. Lancet Oncol. 2016;17:865–7.

The Role of the Community Nurse in Developing Palliative Care Services Ayfer Aydin

Introduction Chronic and non-infectious diseases have been steadily increasing around the world, resulting in an increasing demand for palliative care for patients with life-threatening conditions and the elderly population throughout the world. Each year, an estimated 40  million people are in need of palliative care, 78% of them live in low- and middle-income countries [1, 2]. Due to this increasing need for palliative care, the World Health Organization and the Worldwide Palliative Care Alliance proposed that palliative care can be provided in every locally available condition: at home, in hospitals, outpatient clinics and care centres, or wherever the patient is being cared for [1, 3–6]. Patients with life-threatening diseases suffer multiple physical discomforts, as well as a range of psychosocial and spiritual concerns [7–9]. With the progression of their diseases, the utilisation of health services by patients increases at the end-oflife stage [5, 6]. Studies show that the vast majority of patients prefer to spend their final days and die in their own homes. However, it is seen that patients are more likely to die in a hospital and not their homes. Furthermore, hospital deaths were determined to be in unpreferable conditions, sug-

A. Aydin (*) Koç University, School of Nursing, İstanbul, Turkey e-mail: [email protected]

gesting a vital need for good community-­based care. Providing palliative care in patients’ home settings and their own habitat is the centre of many countries’ health policies [4, 10].

Palliative Care in the Community Developing palliative care services in primary care is essential for realising the expectations of dying people. Among the reasons for the need for palliative care in the community are the psychological stresses of coping with symptoms, dying in an unfamiliar environment among strangers, the burden of life-support, the shortage of available medical and disease-oriented care models, long hospital stays, the financial costs of medical care of a terminally ill patient and the lack of palliative care specialists in hospitals [11, 12]. Palliative care at home aims to increase the quality of life of the patient as much as possible by reducing the negative effects of the disease, relieving emerging problems with appropriate medical and nursing approaches, and ensuring that the patient’s living conditions are affected as little as possible, thus allowing a comfortable death when the time comes [13]. The patients prefer to receive care at home rather than in a hospital setting [3, 10] because the home environment is more familiar, it allows the patient to maintain their normal life as much as possible and allows the family to be in charge.

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Palliative care at home has many documented benefits [3, 8, 9, 13, 14]. These include the following: • Reduced burden of symptoms on the patient and their family • Increased patient and family compliance to care and treatment • Improved recovery • Improved patient and family satisfaction • Reduced hospital, intensive care and emergency room stays • Reduced hospitalisations • Preserving family integrity • Enabling the patient to live in their home setting • Preventing the social isolation of the individual • Providing the highest possible autonomy • Allowing the patient to participate in family and social activities and hobbies • Reduced risk of infection • Allowing a more personal care • Reduced stress for the patient and their family • A lower short-term cost • Uninterrupted health care from diagnosis to recovery • Improved quality of life The purpose of palliative care at home can vary depending on the needs of the patient and their family. The requirements and frequency of palliative care are subject to change as the needs of the patient and their family change, the disease progresses, and the required care gets more complex. The nature of the provided care will usually depend on the demands and expectations of the patient [10].

Community Palliative Care Team Palliative care is a team effort. The palliative care team works together to meet the patient’s physical, psychological, social, spiritual and cultural needs, and to help the families and carers. The members of the palliative care team may include

physicians, nurses, allied health professionals, volunteers and carers. This team can provide continuous and coordinated supportive care in the community. The community nurse is a significant part of the palliative care team [15].

Community Nurse The duties and the definition of a community nurse change according to the conditions and needs of each country. The literature indicates that nurses provide palliative care under different titles, such as a community nurse, public health nurse, home care nurse, the advanced practice registered nurse and district nurse [16–21]. Despite having different definitions and duties, we will use the term “community nurse” throughout this paper to include all of the above members of the nursing team.

 oles and Functions of the Community R Nurse Community nurses carry out significant roles and functions in a home care setting. The community nurse needs to plan systematic, integrated and effective care for the patient. In keeping with the nursing profession’s principles, the nurses who work in this area focus on enhancing a person’s quality of life, regardless of age, and on supporting family members and significant others. First of all, the community nurse must collect data regarding the patient and their family to determine the relevant problems, rank these problems in order of priority, plan and implement appropriate nursing interventions and evaluate the outcomes [22–24].

 ssessment of the Palliative Care A Patient Data collection, the first stage of the nursing process, includes an assessment that aims to determine the care needs of the palliative care patient and their family [25]. It is important to determine the needs of the patient for palliative care at home for a successful outcome. For this purpose, the community nurse primarily needs to collect data and assess the patient.

The Role of the Community Nurse in Developing Palliative Care Services

The factors that should be evaluated during the assessment of the patient and their family in order to determine home care needs are as follows: the patient’s ability to perform daily life activities (independence), disease-specific symptoms, nutritional status, cognitive functions and behaviours, communication, individual expectations and demands, changes in work and family life, understanding the disease, treatment and prognosis, and the ability to cope with the disease and its effects. The community nurse should also evaluate the patient’s carers to determine how the family perceives and defines the disease, whether they require information regarding the disease and their perception of the effects of the disease and treatments. The assessment of the family should also determine urgent priorities, the environment, family resources, family roles and relationships, family functions, social support systems, family expectations and demands and the impact of the disease on the family. Another aspect of data collection is the evaluation of the home setting. It is important to make sure that the physical environment is adequate before the patient is brought home. The community nurse should determine the physical environment requirements to ensure safety and comfort for the patient’s current and future care. It is important that the home environment is safe for nursing applications and adequate for safely storing the medical equipment. The community nurse also needs to determine and take the appropriate measures for bathroom and bedroom safety. All these considerations naturally involve the patient’s resources of economic and social support [26, 27]. The data to be collected by the community nurse for the assessment of the patient and their family in the context of home care are presented in Table 1 [28].

Nursing Diagnosis After data collection, the community nurse should evaluate the data and determine the needs of the patient and establish the nursing diagnosis. Among the most common nursing diagnoses in

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Table 1  Assessment of patient Medical history

Recurring problems during the treatment process

Self-care

Psychosocial assessment

Assessment of the carers

The disease and its severity, stage and prognosis Previous medical conditions Treatment (previous and current) Other medical conditions Symptoms resulting from the disease and treatment Information needs regarding the disease and treatment The effects of the disease and treatment on daily life Emergency conditions Disease-related symptoms and problems; Pain Nausea and vomiting Diarrhea Constipation Mucositis Alopecia Dyspnea Itching Fatigue Level of consciousness Psychosocial problems Invasive interventions (e.g. port, catheter, ventilation) Carrying out daily activities (eating, drinking, bathing, etc.) Fulfilling family responsibilities (e.g. as a spouse or mother, shopping for groceries, maintaining the house) Need for counseling and support Social relationships and support systems Fears (death, suffering, etc.) Coping behaviours Intellectual abilities (e.g. problem solving, educational status) Communication skills The patient’s perception of the disease Health status of family members Relationship with the patient The family’s ability to provide emotional and physical care Communication The family’s knowledge of the disease and treatment The patient and their family’s ability to cope with the disease Changes in domestic roles and lifestyle Sources of support The purpose and meaning of life, concerns about death (continued)

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Nursing Interventions

Table 1 (continued) Environment

Financial status

Physical environment (temperature, lighting, sound, etc.) Physical security of the environment (bathroom, kitchen, stairs, etc.) Hygienic assessment Limitations to care (not having a telephone connection, etc.) Health insurance, solvency, sources of financial support

palliative care patients at home are pain, respiratory distress, fatigue, activity intolerance, impaired body image and social isolation [28].

Planning The community nurse should determine the required interventions for the identified problems. The plan should include what needs to be done, how, and when, how to assess the patient, and how to include the family in the process. The patient and their family need to be a part of home care. The participation of the patients and their families has been shown to be positively correlated with their satisfaction with the care. The community nurse needs to be more careful when providing care for particular patients at home as they are more likely to have issues with home care due to their specific conditions.

Vulnerable Patients in Home Care • Patients with complex or poorly treated conditions • Patients with multiple symptoms and conditions • Patients that undergo multiple and complex treatment procedures • Patients that live alone • Patients who are weak and/or elderly • Patients with inadequate caregiver support • Family disputes • Patients that are confined to bed • Patients without medical insurance

The community nurse should apply and systematically evaluate the planned care. Community nursing applications need to be scientific and evidence-based, and compliant with the relevant legislation. Specific nursing interventions may vary depending on the patient’s diagnosis, severity of the disease, frequency and severity of symptoms and the psychosocial status of the patient. Effective symptom management will ensure an increased quality of life and a peaceful death for the patient.

Evaluation The community nurse must evaluate the patient’s condition during home visits in order to provide the patient with solutions for problems that can be solved by nursing interventions. When the issue cannot be addressed in a home setting, the nurse is responsible for referring the patient to an institution where they can receive proper care. All applications that are relevant to home care practices need to be documented. These records ensure the continuity and evaluation of the provided care and facilitate the communication between different members of the team. The roles and functions of community nurses who provide home care vary according to the factors ­ mentioned above. A general summary of their functions are presented in Table 2 [29, 30].

Symptom Management The community nurse should determine the problems of the palliative care patient with the nursing process, plan the required interventions for the determined symptoms and provide the necessary care [31–33]. The most common physical and psychosocial symptoms and nursing interventions for cancer patients that require palliative care at home are indicated below.

The Role of the Community Nurse in Developing Palliative Care Services

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Table 2  The role and functions of the community nurse providing palliative home care Initiate and maintain good communication with the patient and their family, using appropriate communication skills Help patients and relatives access appropriate care and resources Enable and support patients and their relatives to have a say in their care and to participate in decision making Help the patient understand their own illness and the value of their life Create a safe space for patients and their relatives Explain to the patient and their family about their own responsibilities as a nurse and their role in the team Accept that each patient and their family are unique Respect the unique emotional reactions of the patient and their family Respect the privacy of the patient and their family, and provide an adequate environment Extensively evaluate each cancer patient and their family for an effective and acceptable plan, and provide the necessary support Evaluate the cultural and religious values, emotions and behaviours of the patient and their family regarding death Evaluate and try to fulfil the needs and expectations of the patient and their family Encourage the patient and their family to express their fears, feelings and perceptions Create a safe space for the patient and their family to talk about death Enable the patient and their family to express their emotional and behavioural needs Help the patient and their family understand the medical condition, and answer sensitive questions about death and grief Provide continuous emotional support to the patient and their family Help the patient and their family recognise their strengths Be sensitive and respectful to the sexual needs of the dying patient Plan care in collaboration with the patient and their family Provide the patient and their family with information in a way that they can understand regarding; Care options, available resources and services Disease process and prognosis Medication: effects, side effects, application Treatment: purpose, benefits, side effects Emergency conditions and complications: spinal cord compression, superior vena cava syndrome, cardiac tamponade, bleeding, seizures, hypercalcemia, opioid toxicity and delirium Grieving: coping with grief, coping with the reaction of family members and the others Death process: signs and symptoms of impending death, providing information regarding support of the patient in their final hours Respect the patient’s requests about complementary medicine and provide the necessary information Evaluate the patient’s pain and other symptoms, and help with management Provide the patient and their family with the relevant phone numbers so that they can call and obtain information when necessary Raise awareness regarding self-checking for symptoms at home Provide the necessary information for accessing hospital and emergency services Advise the patient and family about how and from whom to get help Help maintain the patient’s independence, creativity and control to increase their life satisfaction Identify and aid the social support system of the patient and their family Provide information to the patient and their family about the economic aspects of the disease and the available financial support Provide the caregiving family members an opportunity to rest, if possible Care During Death: Inform family members about symptoms that suggest impending death Evaluate the current treatment and discontinue unnecessary medication Evaluate the religious and spiritual needs of the patient, family and carers Provide the family and carers with appropriate written information Help manage pain symptoms Relieve breathing issues Provide the necessary arrangements for the peaceful and dignified death of the patient Enable the patient to be with relatives Help the family realise any cultural or religious practices Discuss the place of death with the patient and their family, and help with their decision Help relieve the family’s worries and fears Grieving Process Help meet the needs of the family Support family members with home visits, if needed

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Physical Symptoms Pain; Pain is an unpleasant feeling arising from any part of the body, with or without an organic cause, that serves as a defense mechanism against physical damage and is commonly associated with past experiences. Etiology: Pain can occur due to many reasons. The etiology of pain can vary depending on its origin, cause and type. Acute pain is caused by prostaglandin, serotonin, histamine, bradykinin and substance P that are released as a result of sudden tissue damage, while chronic pain is caused by tumors and tumor-related structural changes, treatments, inactivity, inflammation, nerve pressure and decreased or hindered blood flow to an organ. Signs and Symptoms: Acute pain activates the sympathetic nervous system and causes physical symptoms such as paleness, sweating, increased pulse, high blood pressure, dilated pupils, tense skeletal muscles, rapid or superficial breathing and behavioural symptoms such as crying and holding the affected organ. Patients with chronic pain experience many difficulties in coping with the changes to their lifestyle. The pain can disrupt the patient’s sleep patterns and quality, and they may experience sleep-related fatigue during the day. Chronic pain may negatively affect the patient’s daily activities and self-care [26, 28, 34].

Nursing Interventions • The patient is evaluated for pain [severity, frequency, type, duration, underlying cause) • The pain is evaluated regarding its effect on the patient’s life • Other symptoms affecting pain are contained (fatigue, insomnia, etc.) • Pharmacological treatment is provided as requested • The patient and family are informed about pain management (effects of drugs, application, side effects) • Non-pharmacological interventions are provided as requested to decrease pain (distraction, massaging, playing music, game therapy, hypnosis, acupuncture, exercise, etc.)

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(a) Fatigue: It is an unpleasant subjective symptom that can prevent an individual from performing their regular functions at their normal capacity, ranging from slight burnout to an unbearable fatigue that affects their entire body. Etiology: The causes of fatigue include muscle weakness, accumulation of damaged cellular components, anemia, cancer pathology and treatment, fever, diarrhea, pain, nausea and vomiting, acute infections, electrolyte imbalances, nutritional disorders chemotherapy, radiotherapy, immunotherapy, side effects of some medications (corticosteroids, beta-blockers, etc.), disease-related anxiety, depression, social isolation and sleep disturbances. Signs and Symptoms: Fatigue can prevent the patient from performing daily living activities and self-care. It can impair concentration and decrease success and social interactions.

Nursing Interventions • The patient is evaluated for fatigue (symptoms, severity, causes) • Fatigue is evaluated regarding its effect on the patient’s life • Other symptoms affecting fatigue are contained (anemia, insomnia, pain, etc.) • Laboratory findings are examined (electrolyte levels, transferrin levels, iron-binding ­capacity, folic acid level, B12 level, thyroid function tests, etc.) • The patient and their family are asked about their knowledge of fatigue and relevant practices • The environment is arranged to reduce the oxygen consumption of the patient • The patient is provided with support for their daily activities • The patient is encouraged to rest • The patient is taught energy-saving approaches • Fatigue-reducing alternative treatments are recommended (therapeutic touch, yoga, sleep hygiene, stress management, massage, regular exercise, reflexology) • Assistance should be offered for housekeeping activities such as cleaning, meal preparation and related errands

The Role of the Community Nurse in Developing Palliative Care Services

• The importance of sleep hygiene should be emphasised • The patient should be encouraged to participate in social activities that interest them (b) Loss of Appetite: This is defined as decreased energy intake when compared with the energy requirement and the reduced desire to eat. Etiology: Anorexia can result from chemotherapy, other medication and changes in the ability to taste, as well as physical problems such as mucositis, stomatitis, nausea, vomiting, diarrhea, pain and difficulty swallowing. In addition, psychological factors such as anxiety, depression, fatigue, and insomnia associated with the disease can also contribute to anorexia. Signs and Symptoms: Reduced desire to eat, nausea and vomiting, weight loss, fatigue [26, 28, 34].

Nursing Interventions • The nutritional status of the patient is evaluated • Factors that cause inadequate fluid and nutrient intake are contained • A nutritional program is prepared for the patient’s disease and prognosis • Meals are arranged to be small and frequent • The patient is provided with high-protein and high-calorie foods • Fatty and spicy foods are avoided to prevent nausea and vomiting • Colorful and sightly food is preferred • Antiemetic drugs are used before meals to prevent nausea and vomiting • Enteral nutrition products are used as per the physician’s instructions • The patient’s weight is monitored • The patient is provided with oral care before and after meals • The patient and their family are provided with nutrition education (c) Nausea and Vomiting: Nausea is an uncomfortable feeling in the stomach, and vomiting is the expulsion of stomach contents as a result of the strong contraction of stomach muscles, often accompanied by nausea.

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Etiology: In the context of palliative care, nausea and vomiting may occur primarily due to the disease, but also from medical treatments, metastases, metabolic abnormalities, vestibular nerve stimulation, obstructions, increased intracranial pressure and anxiety. Signs and Symptoms: Patients with nausea and vomiting may experience gagging, anorexia, dehydration, electrolyte imbalance and malnutrition.

Nursing Interventions • Nausea and vomiting are evaluated (type, form and severity) • Other factors that cause nausea and vomiting are evaluated and contained • The patient’s nutrition is regulated (meal size, content, number, frequency and fluid intake) • The diet of the patient is regulated • Eating small amounts slowly • Avoiding fatty, spicy, too hot and too cold foods • Not consuming liquids while eating • Arrangement of the environment (odour, image and sound, etc.) • Ensuring proper oral hygiene • The patient is taught nausea reducing methods • The patient is provided with antiemetic medication as requested • The patient’s BMI and weight are monitored (weight loss of >10 kilos over 6 months) • The patient is ensured to do relaxation and distraction exercises 30-60 minutes before a meal to reduce the stress caused by a meal and to increase the appetite (d) Constipation: A defecation frequency of fewer than three times a week accompanied by a hard and painful stool lasting for more than two months. Etiology: The causes of constipation include drug treatments (aluminum- and calcium-containing antacids, anticholinergics, anticonvulsants, anti-emetics, antihypertensives, antispasmodics, barium sulfate-containing drugs, calcium and iron drugs, amine oxiadase inhibitors, opioids, tricyclic antidepressants), chemotherapy agents (vinca alkaloids, platinums, hormonal

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agents, taxanes), metabolic deficiencies (hypercalcemia, hyperglycemia, hypothyroidism), neurological deficiencies (sacral nerve infiltration, autonomic deficiencies, spinal cord compression and damage), intestinal obstruction (compression due to tumor growth, radiation fibrosis or scar tissue), low physical activity, immobility, poor muscle tone, various cognitive changes, sedation, depression, changes in bowel habits, history of laxative use, diet (insufficient fibre or fluid intake), nausea, fatigue, mucositis and anorexia. Signs and Symptoms: Decreased stool frequency, straining to defecate, hard and lumpy stool and difficulty defecating.

Nursing Interventions • The patient’s intestinal functions are evaluated daily • The diet of the patient is regulated • The patient is provided with plenty of liquid • The patient is provided with natural foods such as prunes and prune juice • The patient is provided with high-fibre foods • The patient is to regularly take laxatives as ordered • Rectal suppositories and enemas are avoided in patients with neutropenia or low platelet values • The patient is encouraged to move as much as possible (e) Dyspnea; This is defined as a subjectively difficult and uncomfortable breathing sensation. Etiology: The possible causes of dyspnea include anemia, anxiety, fears or claustrophobia, ascites, cerebral tumors, congenital heart disease, cystic fibrosis, hepatic or kidney failure, infection, metabolic and mechanical problems, pain, pleural effusion, left ventricular failure or pneumothorax, increased intracranial pressure and dysfunction of the respiratory muscles. Signs and Symptoms: Wheezing, retractions, nasal flaring, fatigue, fever, chills, headaches, the patient expressing increased number and depth of breathing, difficulty getting enough air, feeling short of breath and lack of air.

Nursing Interventions • Breathing is evaluated (number, speed, rhythm and depth) • The effect of dyspnea on the patient’s life is evaluated • Other symptoms affecting dyspnea are contained (fatigue, insomnia, etc.) • The underlying causes of dyspnea are determined • The patient is settled in a Fowler’s or Semi-­ Fowler’s position • The patient is aided in moving while in bed and to change positions • The patient is encouraged to do breathing and coughing exercises • The patient is provided with adequate hydration • Pulmonary aspiration, if necessary • The patient is provided with oral care • The patient is to avoid strenuous activities and exercises • The patient is provided with support for their daily activities • Providing a comfortable, calm and quiet environment and restricting visitors • Providing oxygen therapy, if required • Providing the adequate medication (mucolytics, bronchodilators, antibiotics, etc.) (f) Delirium: Delirium is a disturbed state of mind that presents with impaired cognitive functions (primarily memory and perception), decreased or fluctuating unconsciousness, impaired attention and orientation, disorientedness, affective disorders, behavioural changes such as apathy and agitation and disturbances in the sleep-wake cycle. Etiology: Factors that can lead to delirium include infection, drugs and toxins, metabolic disorders, electrolyte disorders, kidney or liver failure, trauma, anemia, carbon monoxide poisoning, hypotension, heart failure, B12 or folic acid deficiency, hypertensive encephalopathy, circulatory shock and vasculitis. Signs and Symptoms: There are three clinical subtypes of delirium: hyperactive delirium, hypoactive delirium and mixed delirium. The clinical findings of delirium vary according to the type of delirium and

The Role of the Community Nurse in Developing Palliative Care Services

the patient’s age and developmental stage. “Hyperactive delirium” findings include excessive movement, talkativeness, psychomotor agitation, irritability, aimless navigation and disturbing behaviour. “Hypoactive delirium” findings include psychomotor slowing, sparse or slow speech, apathy, lethargy and sleepiness. In mixed delirium, it is possible to determine findings from both subtypes.

Nursing Interventions • The patient is evaluated for delirium symptoms • The patient is provided with symptomatic treatment • Fluid and electrolyte balances are regulated • The patient’s nutritional status is evaluated • The patient is treated in a quiet, tranquil and well-lit room at home • It is recommended to place a familiar item next to the patient for grounding, such as a clock, a calendar or a photo

Psychosocial Symptoms (a) Anxiety: Anxiety is intense internal distress, restlessness and a state of nervousness or unease that cannot be resolved. Etiology: The cause behind the development of anxiety may vary depending on the developmental stage of the patient and the severity of the disease. The potential causes include being subject to continuous procedures and hospitalisation, encountering a life-threatening disease, uncertainties concerning the disease and treatment, difficulties in keeping up with the changing social life and roles, inadequate pain and nausea control, difficulties adapting to the changing body image as a result of treatments, failed treatment response and learning about metastases. Signs and Symptoms: Restlessness, aggressive behaviours and bodily symptoms such as chest tightness, heart palpitations, difficulty breathing, ­shortness of breath, dry mouth, gastrointestinal complaints, tension in the whole body and insomnia.

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Nursing Interventions • Anxiety level is evaluated • Causes of anxiety are determined • The patient is encouraged to share their causes of anxiety • The patient and their family are encouraged to express their thoughts and concerns about the disease and the treatment process • The patient and their family are helped to bring out their strong sides • The patient and their family are assessed in how much they know and how much they want to know about diagnosis, treatment, complications and prognosis • The nurse creates an effective and safe communication space • The nurse establishes a patient-nurse relationship based on trust • Patients are encouraged to participate in the treatment and care process, while allowing visits from relatives and friends, if possible (b) Fear: Fear is a sudden, emotional, undesirable behaviour and emotional response that occurs in the face of real or unreal danger. Etiology: Fear can root from the disease, hospitalisation, invasive procedures (injections, stitches), lack of information, uncertain prognosis, unfamiliar medical equipment, taking medication, bodily injuries and physical symptoms (pain, vomiting, etc.). Signs and Symptoms: Anxiety, sleep problems, crying, inability to be alone.

Nursing Interventions • The patient’s fears are determined • The patient is encouraged to express their feelings by using age-appropriate communication methods • The patient’s routine is maintained • The patient is allowed and encouraged to resume their routine activities • The environment is adequately arranged • The patient is encouraged to express their hospital-­related fears • The patient is taught relaxation techniques (slow rhythmic breathing, relaxation exercises, distraction methods, etc.)

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(c) Insomnia: Difficulties in the onset, continuation, duration or quality of sleep despite suitable environments and conditions. Etiology: The causes of insomnia include many factors related to the patient, disease, treatment and environment, including the type, anatomical location and severity of the disease, chemotherapy, radiotherapy, hormonal therapy, nausea and vomiting, diarrhea, constipation, sweating, pain, dyspnea, fatigue, environmental factors such as noise and light and psychosocial causes such as anxiety, stress, and depression. Signs and Symptoms: Having difficulty falling asleep, having nightmares, impaired sleep quality and patterns, difficulty waking up, fatigue despite having slept, daytime sleepiness, fatigue due to changes in sleep, agitation.

Nursing Interventions • The patient’s sleep patterns are evaluated • The nurse investigates the patient’s normal sleep habits • Causes of insomnia are determined, the effect of the treatment process on sleep is explained to the patient • Other symptoms affecting insomnia are contained • The patient is informed about effective interventions to prevent insomnia • Drinking warm milk before bedtime • Massaging • Music • Progressive muscle relaxation exercises • A warm shower before bed • Pharmacological treatment as prescribed by a physician, if necessary • Arranging the environment • Reducing loud noises, creating a quiet environment • Reducing alarm sounds • Adjusting the lights as desired by the patient • Medical processes are in a way that will minimise the number of times that the patient needs to be woken during sleep (e.g. combining nighttime medications with measuring vital signs)

• The patient is helped to comply with their bedtime routines (e.g. watching TV for 10–15 minutes before sleep if the patient finds it relaxing) • Methods of relaxation are recommended such as massage, yoga, contemplation, progressive muscle relaxation, breathing techniques and aromatherapy

Support for Family Members The responsibilities of family members have recently become more significant and complex in the context of home care. Palliative care at home has evolved from a simple to a more complex modality of care that often requires advanced skills such as opioid treatment and symptom management. The exact nature of the responsibilities of family members in providing palliative care at home depends on the patient’s physical and psychosocial needs and the dynamics of the relationship between the carer and the patient. The family member that is responsible for providing palliative care at home may also have other responsibilities such as caring for other family members. The nurse should be in continuous communication with family members. They must ­evaluate the family members’ roles and responsibilities in palliative care and their relationship with the patient. They are responsible for providing information that is pertinent to the care of the patient. Family members can also experience physical and psychosocial problems. Thus, it is essential to allow them to express their own problems as well. The nurse should plan the necessary interventions after determining the problems experienced by the family members. The nurse should evaluate the physical and psychological burden on the family and provide the necessary support. It is also the nurse’s responsibility to identify the causes of stress in the family and provide coping methods. The nurse should provide family members with the necessary training and counseling services regarding patient care.

The Role of the Community Nurse in Developing Palliative Care Services

References 1. Worldwide palliative care alliance: global atlas of palliative care at the end of life. 2014. http://www. who.int/nmh/Global_Atlas_of_Palliative_Care.pdf. Accessed 29 Feb 2020. 2. Etkind SN, Bone AE, Gomes B, Lovell N, Evans CJ, Higginson IJ, et al. How many people will need palliative care in 2040? Past trends, future projections and implications for services. BMC Med. 2017;15(1):102. 3. Chiang JK, Kao YH.  Impact of home hospice care on patients with advanced lung cancer: a longitudinal population-based study in Taiwan. J Palliat Med. 2016;19(4):380–6. 4. Stjernswärd J. Palliative care: the public health strategy. J Public Health Policy. 2007;28(1):42–55. 5. Murray SA, Firth A, Schneider N, Van den Eynden B, Gomez-Batiste X, Brogaard T, Villanueva T, Abela J, Eychmuller S, Mitchell G, Downing J. Promoting palliative care in the community: production of the primary palliative care toolkit by the European Association of Palliative Care Taskforce in primary palliative care. Palliat Med. 2015;29(2):101–11. 6. Mitchell G. Rapidly increasing end-of-life care needs: a timely warning. BMC Med. 2017;15(1):126. 7. Burge F, Lawson B, Johnston G, Asada Y, McIntyre PF, Flowerdew G.  Preferred and actual location of death: what factors enable a preferred home death? J Palliat Med. 2015;18(12):1054–9. 8. Peters L, Sellick K. Quality of life of cancer patients receiving inpatient and home-based palliative care. J Adv Nurs. 2006;53(5):524–33. 9. Lai XB, Chen LQ, Chen SH, Xia HO. An examination of home-based end-of-life care for cancer patients: a qualitative study. BMC Palliat Care. 2019;18(1):1–1. 10. Thomas K.  Out-of-hours palliative care in the community. Continuing care for the dying at home. London: Macmillan Cancer Relief; 2001. 11. De Lima L, Pastrana T.  Opportunities for pallia tive care in public health. Annu Rev Public Health. 2016;37:357–74. 12. European Association of Palliative Care (EAPC) task force in primary palliative care. 13. Wiencek C, Coyne P. Palliative delivery models. Seminars in Oncology Nursing. 2014;30(4):227–33. 14. Appelin G, Brobäck G, Berterö C.  A comprehensive picture of palliative care at home from the people involved. Eur J Oncol Nurs. 2005;9(4): 315–24. 15. Dunne K, Sullivan K, Kernohan G. Palliative care for patients with cancer: district nurses’ experiences. J Adv Nurs. 2005;50(4):372–80. 16. King N, Melvin J, Ashby J, Firth J. Community palliative care: role perception. Br J Community Nurs. 2010;15(2):91–8. 17. Austin L, Luker K, Caress A, Hallett C.  Palliative care: community nurses’ perceptions of quality. BMJ Quality & Safety. 2000;9(3):151–8.

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Caring for the Cancer Patient in the Community: In Mind, Body and Spirit Gonca Tuncel-Oguz

Introduction Cancer is the second leading cause of death worldwide, accounting to an estimated 9.6  million deaths in 2018. Although it is one of the major health challenges in many countries, more than 70% of all cancer deaths occur in low- and middle-income populations, where resources available for prevention, diagnosis and treatment of cancer are limited or nonexistent [1]. In 2030, 12 million people are expected to lose their lives due to cancer [2]. Advances in cancer screening and detection techniques, remarkable improvements in antineoplastic and supportive care treatments result in more than 65% of patients diagnosed with cancer living five years, and often more, beyond their diagnosis [3]. Along with the rising global cancer rates and progress in survival, many cancer survivors have to cope with the accumulating symptom burden, deterioration of function and other concerns inherent to slowly progressive, life-limiting disease [4]. Palliative care is an approach to patient/family/caregiver-centred health care that focuses on optimal management of distressing symptoms while incorporating psychosocial and spiritual care according to their needs, values, beliefs and G. Tuncel-Oguz (*) Palliative Care Clinic, Department of Anesthesiology, Dr. A.Y. Ankara Oncology Education & Research Hospital, University of Health Sciences, Ankara, Turkey

cultures. The goal of palliative care is to anticipate, prevent and reduce suffering and to support the best possible quality of life for the patient/ family/caregiver, regardless of the stage of the disease or the need for other therapies [5]. For cancer patients, combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden [6]. It should be delivered concurrently with disease-­ directed, life-prolonging therapies and should facilitate patient autonomy, access to information and choice. In the last years, there has been a strong tendency for new community-based palliative care models to meet the needs of the growing population of patients living with cancer who are well enough to be in home-like settings, yet experience the very real burden of advanced and progressive illness [4]. The World Health Organization (WHO) recommends that all countries adopt a national palliative care policy as a human right, providing different resources and settings, including home-based care [7]. Besides, studies show that most of the patients with advanced cancer want to be cared for or spend their last days at home [8, 9]. A good palliative care program encompassing interventions at all levels of care, with a particular focus on primary health-care services and home-based care, could eventually result in a reduction in hospitalisation, use of health-care resources and costs while

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improving the symptom burden and satisfaction of the patient and caregivers [10, 11]. Given the projected increases in the number of cancer survivors and intensified focus of health-care professionals on community-based palliative care, the palliative care needs of cancer patients living in the community should be comprehensively addressed.

 alliative Care Needs of Patients P with Advanced Cancer Living in the Community Cancer patients often experience multiple symptoms simultaneously, which may be difficult to manage from the time of diagnosis and throughout the treatment or terminal phase of the illness [12]. The individuals living and receiving care in the community have to confront the psychological, social, emotional and spiritual issues related to advanced cancer, as well as burdensome cancer-­related symptoms, in a context other than an inpatient cancer centre [4]. For advanced illness, continuity of care throughout the disease trajectory and across different settings in the health-care system is mandatory. Therefore, an expanded community and home-based palliative care with input from specialist physicians enabling the management of complex pain and other symptoms at home can be beneficial. In a recent study, it has been shown that patients referred to community-based palliative care experience multiple and often severe symptoms that have been insufficiently addressed [4]. Nearly all (95%) patients with cancer had at least one reported symptom, and two-thirds (67%) reported three or more symptoms. Fatigue, anorexia and pain were the first three symptoms and the others followed. A review of interventions prescribed before referral to palliative care demonstrated that a substantial proportion of patients were not receiving treatments aimed at addressing their symptom concerns. For example, most of the patients reporting moderate/ severe constipation and depression were not being treated, although the treatments are available and familiar. It was found that there is a clear

G. Tuncel-Oguz

need for a better discussion of advance care planning and goals. Worries about the future, flagging hope and social needs have been identified as the most burdensome issues facing patients with cancer [13]. Riolfi et al. have conducted a study to assess the effectiveness of appropriate palliative home care services in reducing hospital admissions, and to identify factors predicting the likelihood of patients treated at home being hospitalised [11]. Irrespective of age, gender and type of tumor, patients taken into care by the palliative home care team were more likely to die at home, have fewer hospitalisations and spent fewer days in hospital in the last two months of their lives. The patients with hematological cancers and hepatocellular carcinoma were more likely to be hospitalised and certain symptoms, such as dyspnea and delirium, were determined as predictives of hospitalisation. Providing palliative care at home preserves the dignity of terminally-ill patients and allows them to spend their last days with loved ones at their homes. A growing body of evidence from both population and patient surveys shows that the majority of cancer patients would prefer to die in their own home [14]. Concerning the efficiency of palliative care services, it was demonstrated that changing the focus of care-providing policy from the hospital to the home reduces health-care costs by reducing hospital admissions and the length of hospital stays [15]. Alonso-­ Babarro et  al. found that, when an appropriate palliative home care team was available, there were fewer deaths in hospital and a drop in the overall hospitalisation rates for patients in the last two months of their lives [16]. Gomes and Higginson reviewed numerous studies from around the world, analysing the factors affecting the place where terminally ill cancer patients die [17]. They found consistent evidence of the influence of several factors on the place of death, six of which were strongly associated with death at home. Those were determined as patients’ functional status, their preferences, the availability of home care and its intensity, living with relatives and extended family support. Other studies have found that around 75% of respondents desire to experience their last phase of life at home [14].

Caring for the Cancer Patient in the Community: In Mind, Body and Spirit

However, this is linked to the presence of a strong social and family network; the percentage of younger, single or widowed patients preferring to die at home seems to be well below that percentage. Although patients with advanced illness who are near the end-of-life report wanting to be cared for and die at home, most of them also contradictorily referred to the emergency departments (EDs) in the last weeks or days of life [18]. People with cancer frequently present with exacerbation of existing problems and new symptoms, complications of treatments or difficulties with the care and support systems. The distress of family members while managing the end-of-life symptoms may also contribute to the increase in admissions [18, 19]. In a French study, the most frequent reasons for ED admissions were generalised weakness, social isolation and end-of-life care for home-hospitalised palliative care patients. They also report in their study that half of the transfers to EDs were potentially avoidable for terminally-ill patients in home care [20]. Mercadante et al. showed that, in a population of patients with advanced cancer, most of the problems could be solved just by phone explanations or by a simple medical visit at home [21]. The results of the studies emphasised the fact that many dying people are admitted to hospital for terminal care because of inadequate support in the community. The diagnosis of a patient with cancer involves both the patient and his/her family members in processes of care and in making medical decisions. Caregivers often play a critical role in providing care to patients in the homehospice setting and are often responsible for performing health-care activities such as administering medications when patients are unable to. They usually undertake the complex process of managing cancer pain, which is reported to be one of the most frequent and distressing symptoms, reaching a rate of 90% at the terminal phase of the disease [22, 23]. Pain management is usually a challenging aspect of the caregivers’ role as it is an ongoing issue for family caregivers due to the variability in severity and types of pain [23]. Poorly managed pain results in frustration not only for patients but also for family

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caregivers. Caring for a patient in advanced stages of disease poses severe challenges to the caregivers’ personal life, including the spiritual aspects. Spirituality is an essential part of health care that is defined in the context of religion and culture and affects the individual’s perception of illness and health [24]. Studies have shown that high levels of spirituality are associated with high levels of development and transcendence and a good understanding of the meaning and purpose of life; therefore, it plays a significant role in improving the overall satisfaction and the quality of life in both patients with cancer and their caregivers [25]. Patients with advanced cancer and family caregivers have a wide range of unmet needs; patients report psychological and physical unmet needs while caregivers identify emotional management as being the most difficult [26]. The concepts of presence, in the sense of availability and home visits, and competence, in the sense of effective symptom control and skillful communication, have been identified as crucial for both patients and family caregivers to feel a sense of security [27]. Psychosocial care must be provided, including attention to the psychological, emotional, social and financial well-being of both the patients and the family members while, at the same time, respecting their autonomy.

 urrent Status of Community C Palliative Care in Turkey and Barriers to Implementation In Turkey, cancer was reported to be the leading cause of death (20%) after cardiovascular diseases. According to the most recent results of the Turkish Ministry of Health, cancer incidence was 210.2 per 100,000 people, which means that each year approximately 163,500 patients had a new diagnosis of cancer or, in other words, 450 patients in each day [28]. The high rate of cancer as a chronic illness necessitates the integration of palliative care into comprehensive oncology care early in the disease trajectory for there to be an improvement in the quality of life for both patients and caregivers.

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The awareness of palliative care began in the 1990s and has disseminated very slowly through the years in Turkey. It gained acceleration with the Health Transformation Program (HTP) in 2003, which emphasised the protection of the individual’s as well as the communities’ health. “Good quality and sustainable health service accessible to everyone” was its central theme [29]. In 2009, the Turkish Ministry of Health launched a five-year National Cancer Control Program which included: Central Registry, Prevention, Screening and Early Diagnosis, Treatment and Palliative Care. Among these, palliative care was the weakest part of current cancer control activities in Turkey. The Pallia-Turk project followed in 2010, which was focused on two main topics: (a) opioid availability and (b) implementation of a community-based palliative care model [30]. Guidelines entitled ‘Directives for Palliative Care Services Implementation Procedures and Principles’ were published by the Ministry of Health in October 2014 and revised in July 2015 [31]. This directive highlighted the importance of teamwork, psychological, social and spiritual support and integrated provision of palliative care. Palliative care services were to be provided in palliative care centres at inpatient care facilities and by family physicians and home care teams outside the hospitals. According to the directives, palliative care services could be offered to people living in nursing homes by implementing a palliative care protocol with the inpatient care facilities and by obtaining approval from the Directorate. The palliative care centres were also made responsible for regulating the necessary coordination with family physicians and home care teams to ensure the continuity of care after discharge. The most recent results from the Turkish Ministry of Health show that the country has reached 5481 palliative care beds in 410 health-care facilities throughout 81 cities. All of the beds are localised in inpatient care units and, unfortunately, there are still no designs for hospices, community hospice teams, home palliative care teams or ‘hospital at home’ organisations in Turkey. Global cancer rates have been increasing with an associated rise in the number of cancer survi-

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vors living in the community with symptoms and disabilities as a result of their disease and/or treatment. Palliative care becomes the primary focus of care when disease-directed, life-­ prolonging therapies are no longer effective, appropriate or desired [5]. Most of the patients prefer to be cared for in their own homes until the time of death. Home-based care aims to provide symptom control and quality of life while integrating the family members into the process. In Turkey, the directive ‘Regulation on the provision of home care services’ was first announced in 2005. Home care teams provide health care and follow-up on the patients in line with their medical needs, including rehabilitation, physiotherapy and psychological treatment in their own environment where they live with their families. The patients or families may apply through a central phone number and an appointment is made with the home care team serving that region. After the interview, the necessary interventions and follow-up of care starts. The teams are available only during working hours and cannot help with emergency situations. The existing home care teams are not specialised in palliative care but are expected to provide such care. Although cancer patients can also apply for home care services, statistics show that only a small percentage of advanced cancer patients received home care. Most of the served population were patients with neurologic or cardiovascular diseases [32]. The integration of palliative care and home care services is well-defined in the directives of the Health Ministry, but regional networks, the transition of care and effective coordination are not standardised in the country. Some of the palliative centres try to visit their patients regularly after they are discharged from the inpatient unit. The other palliative care teams work as consultative clinics and visit patients at home after having received consultation from home care teams, especially in cases of symptom control, specific pain or transitioning to inpatient palliative care centres. Nevertheless, many cancer patients and their families feel desperate in the community, waiting for physical, psychosocial and spiritual support. Nurses play an essential role in various settings for the care of cancer patients, both in the

Caring for the Cancer Patient in the Community: In Mind, Body and Spirit

community and in hospitals. They are the major components of the multidisciplinary palliative care teams and their presence is mandatory in home care services. In a study examining the roles, satisfaction and adequacy of home health-­ care nurses on the provison of palliative home care, the nurses specified significant deficiencies regarding home care, such as personnel shortages, lack of funding and policies, poor access to end-of-life or hospice services and decreased community awareness of what services are available. Respondents identified lack of time, funding and concerns about staff relief coverages as the primary obstacles to palliative care education [33]. Several similar problems also hinder good-­ quality home palliative care in Turkey, educational barriers being the most important one. Palliative care in the community is an emerging concept in Turkey, as well as palliative care itself. Most health-care providers find themselves unable to appropriately recognise and palliate the symptoms related to cancer or its treatment, especially pain. Treating an advanced cancer patient with multiple disabling symptoms and suffering in pain is very frustrating for the home care teams. Opiophobia, which is still very common among the health-care providers, patients and families, contributes to the undertreatment of cancer pain. Turkey is one of the countries with statistical evidence of inadequate morphine consumption per capita. In 2010, the adequacy of opioid analgesic consumption was only 7%  – based on a per capita consumption of 14.31 mg morphine equivalents [34]. Moreover, opiophobia, lack of education and a burdensome regulatory system for prescribing opioids prevent many physicians in the community from prescribing opioids, even when palliative care teams or oncologists have previously prescribed them. Patients surviving at home must visit inpatient palliative care centres several times in order to get their prescriptions for opioid drugs. Philosophy and principles of palliative care are not yet included in curricula for medical and nursing faculties in Turkey. After the palliative care directives by the Health Ministry, several workshops, symposiums and conferences were organised to improve the quality of palliative care

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skills, and were attended by health-care professionals from different disciplines, including family physicians and home care teams. A certification program of palliative care nursing was approved and started country-wide, aimed to cover all nurses working in palliative care units. A workshop about ‘Pain Management in Palliative Care’ was organised with the participation of many experts and a national guideline was published in 2016. Despite the evidence of its benefits and ongoing training programs, palliative care is often underutilised or initiated late in the course of cancer treatment, as it is in many countries. There is a growing number of people diagnosed with cancer as a chronic illness in the community. Common triggers for referral to community-­ based palliative care, such as diagnosis of metastatic disease, poor expected prognosis or decline in performance status may transform early involvement palliative care into comprehensive care. One important issue that home care teams cited about advanced cancer patients is that most of them were not satisfactorily informed about the incurable nature of their disease. Although their primary oncologist gave information to the patient and family, there is a tendency to withhold the diagnosis of cancer from the patient for fear that disclosing the prognosis might be damaging. The discussion surrounding death and dying can be emotionally challenging, and avoiding entire discussions regarding goals of care and end-of-life presents obstacles for the home-based palliative care team. Sometimes the expectations of patients/families vs. the services provided by home care teams cannot coincide. Psychosocial care involves attention to the psychological, emotional, social and financial well-being of patients and family members. Members of palliative home care teams usually need to assess and treat psychological symptoms such as anxiety, depression and delirium just as carefully as physical symptoms. Community support is often offered to bereaved family members and encourages spirituality while facing the loss associated with dying and bereavement. Under the present circumstances in Turkey, it is not easy for the home care teams to provide a holistic approach and to address the psychologi-

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cal and spiritual needs of the patients and families. The ideal multidisciplinary team, which would include nurses, doctors, psychologists/ counselors, social workers and trained volunteers or community health workers, is often incomplete in-home care teams; therefore, the physicians and, primarily, the nurses carry the responsibility. They feel under-trained for such skills and do not have enough time or staff available. They may avoid administering simple intravenous infusions, or other invasive procedures that can be performed at home, due to uncertainty about ethical or legal regulations. Support for family caregivers is a core aspect of palliative care provision. Besides physical and psychological morbidity, they are often financially disadvantaged and frequently become socially isolated. In fact, family caregivers make a significant and under-recognised economic contribution to health care [35]. The Turkish government, along with the collaboration of various ministries, executes several programs to solve reimbursement and financial constraints. The patients are supported in terms of medical devices and materials used at home, such as oxygen concentrators, diapers, suctions, etc. A care allowance is paid to the caregivers when verification of the patients’ disability and/or chronic life-­ limiting disease is confirmed by an expert physician. In order to be eligible for this payment, the ratio of disability must be over 50% and the family must have a low monthly income. Unfortunately, most family members do not learn of this opportunity until it is too late in the disease trajectory, when there is not enough time to complete the legal procedures necessary in order to benefit before the patient’s death. This issue also reflects on the role of social workers who are the essential components of the multidisciplinary team of comprehensive cancer care.

Future Perspectives The WHO defines home care as the provision of health services by formal and informal caregivers in the home in order to promote, restore and maintain a person’s maximum level of comfort,

G. Tuncel-Oguz

function, and health, including care towards a dignified death. Understanding the palliative care needs of community-based patients in the advanced stages of cancer represents a first step toward the development of delivery models that integrate care across settings, and that coordinate community oncologists and palliative care providers to meet identified needs of this population. There is a lack of information regarding home-­ based palliative care, and more studies in this area (descriptive/observational, etc.) are needed. National health systems are responsible for including palliative care in the continuum of care for people with chronic life-limiting health problems and developing national policies and plans following the principles of universal health coverage [36]. The service delivery model must take into account the country’s social and health system context. In Turkey, setting up a palliative home care service by integrating palliative home care into existing home care services will be beneficial. Although the country has a social policy supporting the patients and families in many aspects of health-care coverage, reimbursement and other financial procedures must be improved and regulations must be facilitated. Beyond the provision of care, the networks should determine consensually defined goals and quality standards. The use of uniform outcome measurements, especially patient-reported outcomes, and incorporation into routine clinical practice are promoted to evaluate the services given in different settings. Up-to-date training and research activities based on scientific evidence should be organised and supervised, covering all health-care professionals. Previously mentioned barriers such as lack of sufficient time, financial problems and the shortage of available substitute human resources while attending the training courses should also be considered. Cancer patients may require support from different levels of palliative care services during the course of their illness. Home care is one of the desirable palliative care models empowering the patient and family in providing the necessary care [37]. It is crucial to develop uniform criteria for admission and discharge and a functional referral pathway at all levels of care.

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8. Beccaro M, Costantini M, Giorgi Rossi P, ISDOC Study Group, et  al. Actual and preferred place of death of cancer patients. Results from the Italian As the advances in new detection and treatment survey of the dying of cancer (ISDOC). J Epidemiol Community Health. 2006;60(5):412–6. methods of cancer proceed, the number of advanced cancer patients living with multiple 9. Gomes B, Higginson IJ, Calanzani N, et  al. Preferences for place of death if faced with advanced unaddressed symptoms in the community cancer: a population survey in England, Flanders, increase. Early palliative care interventions in Germany, Italy, the Netherlands, Portugal and Spain. Ann Oncol. 2012;23(8):2006–15. comprehensive cancer care of patients have been shown to provide better symptom control, reduce 10. Brumley R, Enguidanos S, Jamison P, et al. Increased satisfaction with care and lower costs: results of a ranhospital re-admissions and costs and facilitate domized trial of in-home palliative care. J Am Geriatr transitions through different settings. Soc. 2007;55:993. The World Health Assembly, the decision-­ 11. Riolfi M, Buja A, Zanardo C, Marangon CF, Manno P, Baldo V.  Effectiveness of palliative home-care making body of WHO, has resolved that palliaservices in reducing hospital admissions and detertive care is an ethical responsibility of health minants of hospitalization for terminally ill patients systems and integration of palliative care into followed up by a palliative home-care team: a retrospective cohort study. Palliat Med. 2014;28: public health-care systems is essential for the 403–11. achievement of the sustainable development goal 12. Dodd MJ, Miaskowski C, Paul SM.  Symptom cluson universal health coverage. The demand for the ters and their effect on the functional status of patients delivery of multi-professional palliative care at with cancer. Oncol Nurs Forum. 2001;28:465–70. home is increasing with examples of improve- 13. Baile WF, Palmer JL, Bruera E, et al. Assessment of palliative care cancer patients’ most important conment in the physical, psychosocial and spiritual cerns. Support Care Cancer. 2011;19:475–81. burden of cancer survivors and caregivers. 14. Radbruch L.  Payne S and the Board of Directors of However, many high-quality studies regarding the EAPC.  White paper on standards and norms for hospice and palliative care in Europe: part 2 recomthe outcomes of home palliative care and the mendations from the European association for palliaeffectiveness of organisations are needed for the tive care. Eur J Palliative Care. 2010;17(1):22–33. best evidence. 15. Lukas L, Foltz C, Paxton H. Hospital outcomes for a home-based palliative medicine consulting service. J Palliat Med. 2013;16:179–84. 16. Alonso-Babarro A, Astray-Mochales J, Dominguez-­ References Berjon F, et  al. The association between in-patient death, utilization of hospital resources and availabil 1. Cancer control, knowledge into action, WHO guide ity of palliative home care for cancer patients. Palliat for effective programmes. Palliat Care. 2007. Med. 2013;27(1):68–75. 2. Sutcliffe SB.  Cancer Control: life and death in an 17. Gomes B, Higginson IJ. Factors influencing death at unequal world. Curr Oncol. 2012;19(1):12–5. home in terminally ill patients with cancer: a system 3. Australian Institute of Health, Welfare. Cancer atic review. BMJ. 2006;332(7540):515–21. survival and prevalence in Australia: period esti 18. Barbera L, Taylor C, Dudgeon D.  Why do patients mates from 1982 to 2010. Asia Pac J Clin Oncol. with cancer visit the emergency department near the 2013;9:29–39. end of life? CMAJ. 2010;182(6):563–8. 4. Kamal AH, Bull J, Kavalieratos D, Taylor DH Jr, 19. van der Meer DM, Weiland TJ, Philip J, et  al. Downey W, Abernethy AP.  Palliative care needs of Presentation patterns and outcomes of patients patients with cancer living in the community. Oncol with cancer accessing care in emergency departPract. 2011;7(6):382–8. ments in Victoria, Australia. Support Care Cancer. 5. National Comprehensive Cancer Network Guidelines, 2016;24(3):1251–60. Version 1. Palliat Care. 2019. 20. Cornillon P, Loiseau S, Aublet-Cuvelier B, Guastella 6. Smith TJ, Temin S, Alesi ER, Abernethy AP, Balboni V. Reasons for transferral to emergency departments TA, Basch EM, et  al. American Society of Clinical of terminally ill patients  – a French descriptive and Oncology provisional clinical opinion: the integration retrospective study. BMC Palliat Care. 2016;21(1):87. of palliative care into standard oncology care. J Clin 21. Mercadante S, Porzio G, Valle A, et  al. Home Care Oncol. 2012;30:880–7. Italy Group (HOCAI). Emergencies in patients with 7. Gwyther L, Brennan F, Harding R. Advancing palliaadvanced cancer followed at home. J Pain Symptom tive care as a human right. J Pain Symptom Manag. Manag. 2012;44(2):295–300. 2009;38(5):767–74.

432 22. Lobchuk MM, Vorauer JD.  Family caregiver perspective-­taking and accuracy in estimating cancer patient experiences. Soc Sci Med. 2003;57:2370–84. 23. Vallerand AH, Collins-Bohler D, Templin T, Hasenau SM. Knowledge of and barriers to pain management in caregivers of cancer patients receiving home care. Cancer Nurs. 2007;30:31–7. 24. Singh DKM, Ajinkya S.  Spirituality and religion in modern medicine. Indian J Psychol Med. 2012;34:399. 25. Glajchen M.  The emerging role and needs of family caregivers in cancer care. J Support Oncol. 2003;2:145–55. 26. Klarare A, Rasmussen BH, Fossum B, Hansson J, Fürst CJ, Lundh Hagelin C. Actions helping expressed or anticipated needs: Patients with advanced cancer and their family caregivers’ experiences of specialist palliative home care teams. Eur J Cancer Care. 2018;27(6):e12948. 27. Sarmento VP, Gysels M, Higginson IJ, Gomes B.  Home palliative care works: but how? A meta-­ ethnography of the experiences of patients and family caregivers. BMJ Support Palliat Care. 2017;7:1–14. 28. Republic of Turkey Ministry of Health, Turkey cancer statistics. 2014. 29. Turkey Health Transformation Program Assessment Report (2003–2011). (2012). Republic of Turkey Ministry of Health, Ankara. 30. Ozgul N, Koç O, Gultekin M, et al. Opioids for cancer pain: availability, accessibility and regulatory barriers

G. Tuncel-Oguz in Turkey and Pallia-Turk project. J Pediatr Hematol Oncol. 2011;33(Suppl 1):S29–32. 31. Directives for Palliative Care Services Implementation Procedures and Principles. (2018). http:/dosyamerkez. saglik.gov.tr/Eklenti/2817.palyatif.bakim.hizmetleri. yonergesi pdf.pdf. 32. Aslan Ş, Uyar S, Güzel Ş. Home health care services practice in Turkey. J Soc Res Manag. 2018;1: 45–56. 33. Brant JM, Fink RM, Thompson C, et al. Global survey of the roles, satisfaction, and barriers of home health care nurses on the provision of palliative care. J Palliat Med. 2019;22(8):945–60. 34. Duthey B, Scholten W.  Adequacy of opioid analgesic consumption at country, global, and regional levels in 2010,its relationship with development level, and changes compared with 2006. J Pain Symptom Manag. 2014;47:283–97. 35. Hudson P, Payne S. Family caregivers and palliative care: current status and agenda for the future. J Palliat Med. 2011;14(7):864–9. 36. Planning and implementing palliative care services: a guide for programme managers. World Health Organization; 2016. 37. Farahani AS, Rassouli M, Mojen LK, et al. The feasibility of home palliative care for cancer patients: the perspective of Iranian nurses. Int J Cancer Manag. 2018;11(8):e80114.

Part XXVI Middle East: Yemen

Prevalence and Management of Cancer Pain in Developing Countries Gamal Abdul Hamid

Introduction A developing country, additionally referred to as the least-developed country or an underdeveloped country with low income, is a nation with a retrogressive mechanical base and a low human advancement record contrasted with different nations [1]. This categorization does not really reflect the advancement status of the global regions such as: South Asia and Sub-Saharan Africa, North Africa and the Middle East, Europe and Central Asia, the Caribbean and Latin America, and East Asia and the Pacific [2]. In 2015, the worldwide recorded cancer cases were 17.5  million, and death due to cancer diseases reached approximately 8.7  million cases [3, 4]. Cancer pain ranges from moderate to severe and is considered to be one of most common diseases in low- and middle-income countries. Most of the patients reach the hospital in late advanced stages and when treatment options are limited. The World Health Organization (WHO) showed that cancer occurs mainly in developing countries, primarily in Africa, Asia, and South and Central America [3]. Throughout the years, the burden of cancer has moved to low-income countries that, as of now, represent about 57% of cases and 65% of cancer deaths worldwide. In

G. A. Hamid (*) Clinical Laboratory and Hematology Faculty of Medicine, University of Aden, Aden, Yemen

developing countries with low income, stomach and liver cancer among males and cervix cancer among females are the main causes of cancer mortality [4]. Poor survival rates due to late-stage diagnosis and the absence of access to convenient treatment were common in patients registered in developing countries [5]. The prevalence of cancer in developing countries has markedly increased with a parallel increase of cancer globally [6]. More than 85% of countries throughout the world have low incomes and suffer from the burden of global cancer [7]. Africa, Asia, and Latin America make up more than 50% of all cancer patients [8] and statistically indicate a high death rate of more than 50% in Asia alone [8]. Cancer is one of the leading causes of high death rates worldwide [9]. Although cancer is one of the chronic diseases that can be prevented and treated, in 2018, statistics reported the deaths of nearly 9.6 million people, and indicated a high incidence of cancer diseases for more than 18 million new cases, most of which occurred in developing countries [10–12]. Despite the differences in the spread of cancer types, cancer has a negative effect on all societies. While the overall cancer burden in high-income societies is still considered high, low-income societies are also overcoming this issue. Developing countries are experiencing a marked lifestyle change similar to that of developed countries, and this exposes them to high cancer rates, particularly colon and

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prostate cancer in men and breast and uterine cancer in women [12]. The high incidence of cancer in developing countries is a greater burden for chronic, non-communicable diseases than for infectious diseases. The great similarity of high mortality rates in chronic diseases in the past two decades, particularly cancer, has exceeded infectious disease mortality rates on all continents, except Africa [13]. Despite the various causes of cancer, age and tobacco, diet, and infectious agents are considered factors for global cancer trends. Certain types of cancer, such as prostate, colon, and breast cancer, are related to Western lifestyle in the more developed and less developed countries [14].

Prevalence of Pain Cancer incidence clearly differs between developed and developing countries in introducing tobacco controls and programs to prevent infectious diseases. Programs for early detection and the introduction of modern diagnostic methods and targeted treatments are also being introduced in developed countries, which lead to a reduction in cancer incidence as well as a high recovery rate and a low death rate that has not occurred in less developed countries. The global cancer burden, higher rates of cancers and prevention methods, high recovery rates and cancer prevention resulting from epidemiological data, and the role of economic and political factors highlighted and challenged the fundamental differences in cancer burden in developing countries to introduce programs to mitigate the potential impact of current and future cancer control. Pain suffering is one of the most common, difficult, and frightening symptoms in cancer patients [15–18]. At the time of cancer diagnosis, more than 30% of patients complain of pain and, when their disease progressed, 85% of patients experience pain. In addition, it is suggested that 25–35% of cancer patients require treatment and, with the progression of the disease, more than 75% of the patients suffer pain. The symptoms of pain vary and are unique. However, there are some generalizations regarding specific types of

Table 1  Causes of moderate to severe cancer pain Type of cancer Oral Bone Genitourinary male Genitourinary female Breast Bronchus Lymphoma

Prevalence % 80–90 80–90 70–80 65–75 50–55 40–50 20–25

cancer and the associated intensity of pain (Table 1) [19]. Pain is one of the most complex symptoms due to its cognitive, behavioral, sensory, and emotional components [20], and more than 50% of cancer patients suffer pain; patients in developing countries show an increased number of pain cases, as most cases are diagnosed at late stages [18], 25% of cancer patients suffer from acute pain, while more than 50% of cancer patients suffer from moderate to severe pain [17, 21]. More than 75% of all cancer patients complain of pain and require pain treatment interventions. The recommendations in the WHO’s guidelines are divided into a three-level ladder approach for methods of pain management with regard to drugs, including the use of opioids. The purpose of this ladder is to make pain relievers readily available to all cancer patients with advanced stages and to access effective medications at reasonable prices or even free of charge (Fig.  1) [22]. These guidelines are universally acceptable and appropriate for all cancer patients [23]. According to clinically-proven clinical guidelines, the prevalence of cancer pain is about 39% in the USA, 40% in Europe [24], 42.1% in Latin America [25, 26], 52% in Asia [27–29], 70% in the Middle East [30–32], and 61.6% in Africa [33, 34]. Not undergoing treatment for pain or not being regularized to treat pain has a negative impact on mental and physical health and lifestyle, causes severe suffering, and impacts the functional activity of cancer patients [16, 20, 25]. Repercussions from pain suffering include an effect on movement and daily activity, disturbance in entertainment, sleeping hours, and professional and social life [16, 17, 35–37]. Also, the

Prevalence and Management of Cancer Pain in Developing Countries

If pain persists or increase Nonopioid (With or without adjuvants) Mild pain

If pain persists or increase Weak opioid With nonopioid (With or without adjuvants) Moderate pain

437 Strong opioid or nonopioid

(With or without adjuvants)

Severe pain

Fig. 1  WHO analgesic ladder. (Modified from the World Health Organization [22])

severity and duration of pain reflects quality of life (QoL) [16]. In cases of acute pain, the patient may lose his/her appetite, refrain from taking pain medications, or have suicidal thoughts [38]. In this case, the patient’s health deteriorates, and despite the rules and principles of international pain relief agreed upon by the World Health Organization [39] treatment is, in practice, weak and under-­ served in developing countries [40–42]. A comparison was performed between the consumption of and the need for opioid analgesics at country, regional, and global levels and showed improvement in the treatment of pain in developed countries [43, 44]. Cultural, legislative, and regulatory barriers to health care are major obstacles and adversely affect pain management [20]. Opioid treatment and health care are not readily available or easily accessible [45]. Physicians face obstacles and challenges at many levels when it comes to opioid acquisition [46]. The poor training of health-care professionals and lack of patient awareness worsens the health situation, as it leads to an increased negative impact on the patient’s QoL [45–47]. The increasing suffering of cancer patients is linked to the lack of professional training for doctors and nurses, administrative bureaucracy, and the lack of financial resources for purchasing opioids and chemical and palliative drugs to relieve pain [48, 49]. In addition, factors such as poverty and illiteracy increase suffering. The prevalence of pain experienced in advanced-stage cancer patients is 70–80% when not being treated and factors such as weak strategic prevention, illiteracy, and low income exacerbates the patients’ condition in the late stages of

the disease [48]. The persistent suffering from discomfort and its accompanying symptoms reduces the patients’ quality of life and places a burden on the family’s economic and general health that, in turn, has a negative impact on the patient’s ability to tolerate treatment [48–50].

Palliative Care of Pain The increasing incidence of cancer in developing and developed countries, as well as the high rate of aging globally, presents the urgent need to raise the level of palliative care. Despite the importance of palliative care, it is difficult to gauge the need for it using current research methodologies [51, 52]. According to the World Health Organization, the response to suffering, which includes professionals in the psychological, physical, spiritual, legal, and social fields, requires professional availability in a number of specializations in the field of health care [53, 54]. Despite the burden of population density, India and China have witnessed a significant improvement in the development of palliative care services and have integrated them into their health-care strategy systems. This is considered a major advancement in reaching both curative medicine and the pain relief associated with limited economic and social situations [55]. The low rate of early diagnosis and the registration of 75–80% of patients in late stages reflects the weakness of cancer prevention services in developing countries. Palliative care often works to relieve pain symptoms, and health-­ care services that have no benefit in improving quality of life or longevity are less important,

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especially in the final stages of the disease. Estimated World Health Organization statistics indicate that 80% of the global population suffers from the limited provision of adequate opioid analgesics [51]. In addition to the suffering of the patient, family and friends’ suffering also increases due to the patient not receiving appropriate treatment to relieve the pain. Therefore, in order to help patients, there must be strong pain management to prevent this suffering. Palliative care is considered to be one of the most important resources that are not given adequate attention and use in developed countries. At the same time, it is considered to be a resource that is unavailable or limited in developing countries. Most cancer cases in developing countries are diagnosed in advanced late stages, and the limited treatment options, if available at all, are necessary in these countries. According to the guidelines of the World Health Organization, palliative care is the fourth major option for controlling pain in developing countries. Improving the quality of life of patients and their families is one of the priorities of palliative care, with a comprehensive methodology for psychological, physical, and cultural aspects [56]. Unfortunately, 80% of cancer patients in developing countries do not have access to palliative care and this number will surely rise in the coming years; this is an indication of how serious the consequences are for patients with low incomes, and requires urgent intervention from the local governorates of these countries to improve palliative care services [56]. Due to the governmental ban of opioids by some countries and the scarcity of their availability in the market, there is an urgent need to provide morphine and opioid derivatives to suffering cancer patients in order to reduce the severe pain associated with the disease and its treatments [57].

 pioid Availability in Developing O Countries Adequate treatment of pain is considered by professional health organizations to be one of the most important human rights [58, 59]. In accor-

dance with strict legal regulations governing the optimal and legitimate use of opioid analgesics, it is necessary to dispense these analgesics to cancer patients who need them to alleviate their suffering. In most low- and middle-income countries (LMICs), pain medications are limited and require strict procedures and laws, negatively affecting patients’ lives. The availability of opioid analgesics is often a special problem, presented in Table 2, Analgesic medications listed in the WHO’s Model List of Essential Medicines (WHO’s MLEM) [60]. According to the requirements of the Global Opioid Policy Initiative (GOPI), the opioid formulations that are available for the treatment of cancer patients in developing countries are: morphine injection (Minj), codeine, morphine immediate release (MIR), fentanyl transdermal (FTD), oxycodone immediate release, and methadone per oral (MPO) [42]. Morphine and codeine are the most common pain medications available in most countries. The Table 2 Analgesic medications listed in the WHO’s MLEM Opioid analgesics Morphine Codeine Non-opioids and non-steroidal anti-inflammatory medications  Ibuprofen  Aspirin  Paracetamol Medicines used in mood disorders  Amitriptyline Anticonvulsants, anti-epileptics  Sodium valproate  Carbamazepine Local anesthetics  Lidocaine  Lidocaine with adrenaline  Bupivacaine General anesthetics  Nitrous oxide  Ketamine

Form of Administration Injection, oral liquid, tablet Tablet

Tablet Tablet, suppository Tablet, oral liquid, suppository,

Tablet Tablet, oral liquid Tablet, oral liquid Injection Injection Injection Inhalation Injection

Prevalence and Management of Cancer Pain in Developing Countries

Philippines, China, Malaysia, Israel, Qatar, and Saudi Arabia have all seven formulations available; in Algeria, Morocco, and Iran about six opioid formulations; five formulations are available in Hong Kong, Japan, Vietnam, South Korea, and Thailand; while four formulations are available in Egypt, Lebanon, Yemen, and Palestine. Oral MIR formulation is not available in Cambodia, Kazakhstan, Afghanistan, Bhutan, Bangladesh, and Laos [61]. Other countries such as Bangladesh, Afghanistan, Myanmar, and Bhutan have access to only three formulations: codeine, MPO, and Minj. Access to FTD was achieved in many countries, despite the lack of morphine tablets, which are at a lower cost, and the availability of FTD, which is expensive. Many countries provide these drugs free of charge to all cancer patients and some countries require paying 25% of the treatment cost as a community contribution; however, in some countries such as the Philippines, Cambodia, Nepal, Laos, Bangladesh, and Indonesia, the patient is forced to pay all the costs of treatment [62].

Barriers to Palliative Care Despite support for cancer treatment programs, there are still gaps between the palliative care service offered and patients’ need for care. Eliminating obstacles and filling the gaps is a major global necessity that needs greater attention from the parties that care for cancer patients. Since most cancer patients in many developing countries have been diagnosed at the late advanced-stages of the disease, palliative care and pain therapy are the best realistic treatment options. The barriers to the health-care system that interfere with the adequate management of pain on a large scale is considered a problem for health-care professionals [50]. Unfortunately, priority is not given to pain management or individual patient care by either global or governmental organizations. At the global level, the lack of governmental attention was reflected in the World Health Organization’s

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poor level of interest in pain management and its focus on communicable disease control. One of the main challenges in providing pain relief treatment is the significant absence in cultural programs regarding the awareness of assessment and management of pain through the already available medications. Also, there is a lack of interest on the part of medical institutes and colleges in improving nursing curricula and medical colleges regarding cancer pain management. In some areas, palliative care services are provided according to international standards; however, patients in many developing countries in Asia and Africa and, in particular, the countries of the Middle East and Asia, resort to traditional treatment such as herbs. In many cases, when there are gaps between the level of pain and the provision of treatment, patients must endure the pain and live with it. Palliative care policies’ guidance for health-care systems in most developing countries is necessary and gaps and weaknesses are well-covered in the literature. Also, there is a decrease in the number of palliative care teams in most countries. The absence of chemotherapy and supportive treatment for cancer patients along with the limited quantities of opioids to treat cancer pain has had a negative impact on patients’ lives. The burden of travelling to search for opioids and the lack of financial resources for patients to purchase these drugs are factors that negatively affect them [63]. The rate of opioid consumption is an indicator of palliative care services in any country. The availability of opioids in the region does not necessarily reflect the availability of opioids to patients.

Opioid Availability and Legislation Developing countries are making great efforts to overcome difficulties in the provision and availability of essential medicines to all patients. All countries have standards and regulations for prescribing morphine after it has been approved by the supervising authorities in the Ministry of Health and to ensure that treatment reaches the oncology centers easily. Although some medica-

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tions are almost always available to patients in some countries, a few countries such as Yemen, Cambodia, Afghanistan, Myanmar, and Bangladesh require that opioids be administered only with special permission. This requires the registration of all patients attending outpatient clinics, inpatient clinics, and departments of chemotherapy in countries such as Pakistan, the Philippines, Afghanistan, Kazakhstan, and Bangladesh [62]. However, some countries such as Vietnam and China have compulsory registration for outpatients. Most countries have regulatory and administrative restrictions for prescriptions. While some (Pakistan, the Philippines, Cambodia, China, Mongolia, Laos, Myanmar and Thailand) have restrictive access to these prescription forms, in a few countries such as Cambodia, Mongolia, Pakistan, and the Philippines, the prescription requires payment [64]. The regulations for licensing physicians and pharmacists to prescribe the opioids vary from one country to another in the developing countries. The pharmacists in Afghanistan are allowed to give prescriptions in emergency situations and in conditions of acute pain, during official holidays and evening shifts. Pakistan, Malaysia, and Indonesia have permitted doctors to be approved by phone or fax [42]. There are differences in the rules and guidelines for prescribing opioids in the Middle East region according to each country’s regulations [65, 66]. “Opioid phobia” is one of the daily problems in the region that lead to insufficient pain and symptom management. When comparing countries in the Middle East region, we note that Cyprus and Israel have educational programs for doctors, pharmacists, and other health professionals in the optimal use of opioids in palliative care [67, 68]. Turkey’s experience has been unique in developing a continuous awareness training program for government leaders, doctors, nurses, and the public. It is a pioneering endeavor that can be applied in other countries. Jordan, along with the World Health Organization, has been remarkable in developing and improving prescription regula-

tions for opioids and developing the field of rehabilitation and training for doctors and pharmacists. Cyprus and Israel are the largest consumers of opioids, as they are among the most educated and have opioid education programs that distinguish their specialized palliative care services. Lebanon, Libya, Palestine, Syria, and Yemen have no restrictions on inpatients, but in other countries patients may require a permit to receive opioid treatment. The most common opioids available and registered for palliative care are codeine, morphine, and pethidine (meperidine). More than 20 years ago, the International Narcotics Control Board (INCB) recorded a perception that assumed interest in using proprietary opioids in the treatment of pain in all cancer cases, which included palliative care, the most expensive form of treatment. In recent years, doctors tend to prefer prescribing fentanyl treatment, especially in the form of skin patches.

Opioid Availability and Cost Most countries cover the cost of opioids and dispense them free of charge to all cancer patients, and some countries cover 75% of the cost of treatment and the patient bears 25% of the cost of opioid analgesics. In Afghanistan, Lebanon, Morocco, and Syria, patients bear the full cost of medicines. Iraq, Lebanon, Libya, Afghanistan, and Palestine have ceased to supply controlled-­release procedures of injectable morphine. Oxycodone, methadone, and fentanyl are not regularly available in most countries [69]. Suffering from cancer pain remains one of the most significant global problems, especially in developing countries. The suffering of the patients must be given greater attention and the practice of patient care should consider all of the social, psychological, spiritual, and cultural aspects of the individual; the pain should be evaluated in a comprehensive and continuous manner, and pain management must be given greater attention, with a comprehensive approach.

Prevalence and Management of Cancer Pain in Developing Countries

Raising the level of awareness for cancer and its consequences, along with cancer treatment programs relating to the spread of cancer pain, is of urgency and one of the most important criteria for improving health care. The responsible institutions are committed to developing programs to educate medical personnel and patients on how to use and recognize painkillers, and governments are working to provide effective drugs according to the basic list agreed upon with the World Health Organization. Studies and statistics from the United States of America, Canada, and the United Kingdom indicate that palliative care programs for cancer-related diseases play an important role in reducing the costs of health-care programs [70]. Future plans throughout developing countries include comprehensive strategies that are beneficial for improvement in other regions and countries around the world. In developing and low-income countries, the basic guidelines for palliative care providers to negotiate with governments of developing countries to develop palliative care are as follows: 1. Develop a comprehensive strategy that supports the integration of palliative care and pain treatment programs in the health-care system, in addition to incorporating the palliative care program into the heath plan to monitor the national cancer program 2. Create and develop safe financing 3. Recognize the right of patients to appropriate assessment and management of pain 4. Determine and ensure staff competency in pain assessment and management, and address pain assessment and management in the orientation of all new staff 5. Establish policies and procedures that support the appropriate prescription and ordering of effective pain medications 6. Educate patients and their families about effective pain management 7. Examine adequate supply methods to secure opioid and other essential materials and medications for palliative care programs

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8. Establish training programs for all cadres of health professionals on highly trained analgesics care 9. Coordinate with universities to adopt a palliative care program as a medical specialty, and to consider it as part of basic education programs for the medical and nursing curricula 10. Support programs for developing elderly care and home medical services for centers of health-care systems.

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Part XXVII Central Asia: Afghanistan

Palliative Care: The Care That Is Rarely Practiced in Health System of Afghanistan Maihan Abdullah, Najia Niazi, and Musa Pakteen

Afghanistan is a landlocked country in South-­ Central Asia surrounded by six countries [1]. It was estimated in 2018 that the population was more than 37 million [2], of which three quarters live in rural areas. The average size of a family in Afghanistan is 7.7 people. Even though more than 75% of the nation’s labor force is employed, about 80% of jobs are categorized as vulnerable and only 20% are deemed as decent employment. Approximately 45% of the jobs are in the agricultural sector and only 18% are in the area of manufacturing. According to a recent survey, more than half of Afghans live below the national poverty line. While the literacy rate among Afghans aged 15–24 is nearly 55%, the adult literacy rate is only 35%, one of the lowest in the world. In Afghanistan, women of childbearing age have, on average, 5.3 children. The life expectancy at birth for women is 67 years and for men 64. Nearly half of the Afghan population is under the age of 15, and only 3% are 65 and older, making Afghanistan one of the youngest nations on earth [3, 4]. The responsibility for the Afghans’ health primarily falls on the Ministry of Public Health (MoPH). The health system in Afghanistan has M. Abdullah (*) National Cancer Control Program, Ministry of Public Health, Kabul, Afghanistan N. Niazi · M. Pakteen The Cancer Center at Jumhuriat Hospital, National Cancer Control Program, Ministry of Public Health, Kabul, Afghanistan

considerably improved since the fall of the Taliban in 2002 [5]. With the support of international donors in 2003, the MoPH established the Basic Package of Health Services (BPHS), contracting out primary healthcare services in rural areas to non-governmental organizations (NGOs). In 2005, the Essential Package of Health Services (EPHS) was prepared outsourcing secondary health services in Provincial and Regional Hospitals to NGOs. Out of 34 provinces, 31 are contracted out to NGOs while health services in the remaining three provinces are managed by MoPH itself. In addition, tertiary healthcare services which are mainly located in the capital city, Kabul, are managed by the MoPH.  Currently, 93% of people are within two hours distance from a public clinic through any means of transportation [6–8]. The Current Health Expenditure (CHE) in 2017 was approximately USD 2.4  billion, accounting for 12% of the gross domestic product (GDP), which is higher than other low- and middle-income countries (LMICs) such as India, Pakistan, Egypt, Nepal, and Tajikistan. Of the USD 2.4  billion, USD 1.8  billion (75.5%) was out-of-pocket expenditures paid by households, USD 470 million (19.4%) was funded by international donors, and only USD 123 million (5.1%) was paid by the Afghan government. More than half of the household out-of-pocket expenses was spent on medical goods and medicine, 34.6% on diagnostic services, and 10% on outpatient ser-

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vices. According to the above statistics, household out-of-pocket spending pushed almost 14% of people into poverty [9, 10]. Considering that infant, child, and maternal mortality rates in Afghanistan have been one of the highest in the world, it is not surprising that international donors and the government have prioritized these conditions since 2003 [8]. According to the Afghanistan Mortality Survey conducted in 2010, however, the leading causes of death among Afghan men and women are were non-communicable diseases (35%) and infections (30%), whereas perinatal conditions account for 13%. Maternal conditions represent only 5% of total deaths in Afghanistan. Cancer accounts for 6% of all deaths [1]. Based on International Agency for Research on Cancer (IARC) estimates, in 2018 about 20,000 Afghans suffered from different types of cancer (9150 male and 10,300 female). In the same year, almost 15,000 Afghans died of cancer. However, these figures are conservative, and it is assumed that between 30,000 and 40,000 Afghans live with cancer. The leading cancers in Afghanistan are that of breast, stomach, lip and oral cavity, esophagus, lung, and blood, respectively [11]. Until 2016, there was not a single bed dedicated for oncology patients in the Afghanistan health system; however, hematologic oncology patients were admitted to the hematology departments in Jamhuriat Hospital and the Indira Gandhi Institute of Child Health (IGICH), which were already established. As a result of two years of advocacy efforts for cancer control by known social and political figures, the Cancer Diagnosis and Treatment Project was established in 2016 within the Ministry of Public Health. The Cancer Diagnosis and Treatment Project was promoted to the National Cancer Control Program (NCCP) in January 2017. The first and only Cancer Center in Afghanistan was established in Jumhuriat Hospital (located in downtown Kabul) in late 2016, with a 10-bed day care unit and 20-bed inpatient unit. At the moment, the oncology ward has a 20-bed day care, a 20-bed surgical, and a 40-bed medical oncology unit with a staff of about 100  in total. On average, 100 patients visit the outpatient department every day. As of 2019, it was estimated that nearly 50,000

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visits were paid to the ward. In addition, the NCCP established a 15-bed medical oncology ward in Herat and Balkh, which are the regional capitals in the west and in the north of Afghanistan, respectively. Moreover, breast cancer diagnostic centers were established in Kabul and Herat provinces. Unfortunately, radiotherapy is not available in Afghanistan [12, 13]. As the Cancer Center in Jumhuriat Hospital and the oncology wards in the two provinces are recently established, the public and some healthcare providers are not aware of the oncology services. Patients suffering from symptoms of cancer usually seek care at district, provincial, regional, and national hospitals. Data from the Kabul Cancer Registry clearly show that of 8000 cancer cases, most patients were diagnosed at late stages. The most common presenting symptoms are pain, constipation/obstipation, nausea/ vomiting, dysphagia, dyspnea, odor, especially in breast cancer and sarcoma of bone, stomatitis, anxiety and depression, and ulcer/bed sores. In addition to pain and other physical problems, cancer patients and their family members face psychological, social, and spiritual distress. Due to the relatively low incidence of cancer and young population, Afghanistan is in the category of countries where the percentage of adults in need of palliative care for cancer at the end of life is the lowest; however, when it comes to the need for pediatric palliative care for cancer, Afghanistan ranks among the countries with the highest percentages [14]. Even though the Worldwide Palliative Care Alliance (WPCA) has reported that Afghanistan does not have hospice-­ palliative care services [15], a home-based palliative care project called Hamdardi was established by a non-profit organization, Silk Road Development, back in 2010. This nurse-run project provides hospice care in the Dasht-e-Barchi neighborhood, which is located in western Kabul. The nurses provide psychological, social, and emotional support as well as pain management with nonsteroidal anti-inflammatory drugs (NSAIDs) and tramadol [16]. In view of the fact that 60–70% of patients are diagnosed at advanced stages, most of them need palliative treatment. The most common com-

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plaint in these patients is pain, ranging from mild to severe, depending on the type of cancer and treatment as well as on personal characteristics. The most commonly used analgesic for moderate pain is diclofenac sodium injection 25  mg/ml (3 ml). If pain persists, the second choice of most physicians in Afghanistan is tramadol HCL 75 mg plus paracetamol 650 mg per oral ingestion tablet. Subsequently, if pain continues or increases, physicians usually prescribe tramadol HCL 100 mg injections. These pain medications are administered at almost all levels of public health facilities as well as at individual practices and private hospitals. If pain is not controlled through the above-­ stated measures, patients are referred to provincial, regional, or national public hospitals. At these hospitals, patients are assessed for pain and paracetamol, NSAIDs, and tramadol, pentazocine, or nalbuphine are prescribed parentally in different combinations. Generally, when pain is not relieved through enteral analgesics or few doses of parenteral analgesics, patients are referred to public health facilities for parenteral analgesics, especially opioids. Morphine injection, usually available in public and private hospitals, is rarely used for pain management, particularly for cancer-related pain. In Afghanistan, regulation of opioid drugs and other pharmaceuticals is the responsibility of the National Medicine and Healthcare Products Regulatory Authority (NMHRA). The NMHRA also develops and reviews the Essential Medicine List (EML), National Licensed Medicine List (NLML), and National Formulary [17]. EML is implemented in public health facilities including the BPHS, EPHS, National Hospitals, and in all other national programs, while the NLML is used in the private health sector. The medicines in NLML can be manufactured in the country as well as imported. The opioid analgesics in the NLML are fentanyl, morphine (HCL and sulfate), nalbuphine, codeine, pentazocine, pethidine, and tramadol. Methadone is also present in NLML but under the “drugs used in addictive disorders” category, whereas codeine is listed under the “Expectorants, excl. combinations with cough suppressants” category.

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Of these opioids, only morphine, pethidine, and tramadol are present in the EML.  Public health facilities can merely procure and administer medicines that are included in the EML while methadone can only be used in addiction rehabilitation centers, mostly run by the MoPH.  In Afghanistan, tramadol and methadone are available in oral ingestion and injection forms but morphine, nalbuphine, and fentanyl are available only in injectable form. In addition, codeine is available in oral ingestion as well as in syrup form [18–20]. Although the MoPH has allowed the import and sale of a few opioids, the uses of those medicines are limited at all levels of health facilities both in public and private sectors. Morphine, recommended by World Health Organization (WHO) and the International Association for Hospice and Palliative Care (IAHPC) [21, 22], is used for pain management of acute cardiovascular conditions and sometimes in orthopedic cases. In addition, morphine is used at the Indira Gandhi Institute of Child Health. It is noteworthy that the use of opioids at the French Medical Institute of Children (FMIC), the Cure International Hospital of Kabul, and in hospitals run by the International Committee of the Red Cross (ICRC), Médecins Sans Frontières (MSF), and the Emergency is different from the rest of the country; however, they generally do not provide services to cancer patients. The barriers to the use of opioids in palliative care are due to the systems, clinicians, and patients.

System-Related Barriers Many essential analgesics, especially opioids, are not listed in the NLML and thus the import is illegal. • Few opioids can be procured and used by public health facilities, even at tertiary levels. • The import processes of opioids are time-­ consuming, complicated, and bureaucratic. • The supply of opioids on the market is insufficient and some formulations are not available at all.

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• Opioids are not available in many pharmacies. • The expiration dates of opioids on the market are usually short. • There is no national guideline or protocol for pain management in health facilities.

Clinician-Related Barriers • Clinicians usually do not have sufficient skills to assess pain. • Clinicians often do not possess adequate knowledge of pain management. • Clinicians typically do not take pain seriously and do not prioritize it. • Clinicians fear side effects. • Clinicians are unwilling to prescribe opioids.

Patient-Related Barriers • Communication problems between patients and healthcare providers exist at all levels of health facilities. In Afghanistan’s traditional and religious society, especially in rural areas, most female patients communicate with male providers through their male caregivers. • In order to please the clinician, patients tend to tolerate the pain and do not make it obvious. • If patients’ pain is not relieved, they frequently change hospitals and doctors [23]. Even more than pain, dysphagia and dyspnea are bothersome and inconvenient for patients and their family members. In almost all cases of dysphagia, physicians at provincial and regional levels do not provide care and refer the patients to Kabul. Those who are willing and can afford to get to Kabul can only receive palliative treatment in a few hospitals. If patients can tolerate it, endoscopic metal stenting, gastrostomy, or jejunostomy is performed. On the other hand, other symptoms such as nausea and vomiting, anorexia, bed sores, diarrhea, constipation, and stomatitis are treated at all levels with the medicines recommended in the Essential Package (EP) of Palliative Care; however, pressure-reducing mat-

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tresses are not available. Patients with sarcoma of the bone, oral cavity, and advanced breast cancer present with malodor. This is not only discomforting for patients and their family members but also for healthcare providers and other patients. Sometimes a debridement or toilet mastectomy is performed, but otherwise not much is done for such patients. In the only Cancer Center in Afghanistan located in Jumhuriat Hospital, 60–70% of the treatment is palliative. Most surgical palliative procedures are performed at provincial, regional, and national public hospitals as well as in most private hospitals. Nerve block procedures for pain relief is not available in Afghanistan. NCCP could not find a single surgeon or anesthesiologist in the public or private sector to block the nerve of an advanced breast cancer patient who had unbearable neck and shoulder pain. Palliative chemotherapy is performed at some private hospitals in Kabul, at the Cancer Center in Jumhuriat Hospital, as well as at the newly established oncology wards in Herat and Balkh provinces. Those who require palliative radiation are referred to neighboring countries. Along with pain and other physical symptoms, cancer patients suffer from psychological, social, and spiritual distress. The term “cancer” sounds devastating and there are many factors that contribute to this notion; most patients and their families believe cancer is not curable. In addition, those who believe cancer can be treated, do not trust the doctors in Afghanistan. Therefore, patients go to other countries for treatment, mainly Pakistan, India, and Iran. Most patients sell their homes, livestock, farmland, vehicles, and jewelry, and even borrow money to afford the journey and treatment. Despite enduring the many problems and expense of going abroad, at the end of the day, their palliative care is done in Afghanistan. Sameera sold her daughter in order to afford treatment to get well for the rest of her family. Later, when she started feeling better, she regretted selling her daughter. She tried to get her daughter back by paying through any means but the family did not agree to return the daughter to her mother.

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In Afghanistan, a “Mullah”, or traditional and spiritual healer, also plays an active role in the treatment of terminally ill patients. We often hear that a traditional healer in a rural district has prepared a medicine that can cure cancer. In 2018, a 16-year old boy from Ghazni province approached the MoPH claiming that a medicine he prepared can cure cancer. Recently, a traditional healer posted some videos on Facebook which show that he has prepared a cancer medicine which has cured some patients. A friend of mine, who is a doctor himself, and has a doctor and a pharmacist in his family, drove four hours to buy that medicine for his father. His father had been receiving palliative chemotherapy due to advanced stomach cancer. Depending on the level of belief, educational level, and financial status, most patients go to a traditional or spiritual healer at some point during their illness. Afghanistan is one of the most religious countries in the world and the majority of the people believe in faith healing. Patients or their caregivers travel long distances to find a Mullah with the hope of being cured. Many patients report the physical and/or mental efficacy of faith healing following unsuccessful medical treatment inside or outside the country. A Mullah in Ghorband district of Parwan province, who is a cancer survivor himself, provides faith healing to many cancer patients. He claims that he heals patients with the help of Jinns (spirits). Anosha, who has breast cancer for the past four years, told her psychologist that one of her relatives gifted a car to this Mullah after being successfully treated. Anosha now also goes to this Mullah and finds the treatment effective. Many patients report that a Mullah does not provide treatment for monetary gains. In fact, he treats patients solely because of the gift he has for treating them. Many patients have reported positive effects while some have reported otherwise. In such cases, religious beliefs of these people may overrule everything they witness or experience. Most Muslims strongly believe,

Therefore, based on the above belief, if a patient dies, their families go through all five stages of grief more easily. We have witnessed family members reporting that it was Allah’s will and neither they nor we could do anything to help the patient. These statements are based on the following verse of the Quran:

Our Lord, Allah, has command over everything and he has taken the responsibility of three things: provides food to His people, choses the life partners for His people, and gives death to His People.

Zainab was a breast cancer patient with five children, the youngest being one year old. Her husband was unemployed. She was receiving palliative chemotherapy along with psychosocial therapy at

Indeed we belong to Allah, and indeed to him we will return.

Furthermore, many people in Afghanistan consider cancer to be a curse. Many patients die due to the rejection they feel and encounter everywhere in society, especially in their own homes. People believe cancer is a communicable and incurable disease, and even eating together with a cancer patient is no less than a disaster for them. Additionally, many female patients have been left by their husbands when they come to know that their wives have cancer. Bibi Zulaikha was an orphan girl brought up by her aunt. When she grew up she got married and had five children. As soon as the husband discovered that she had cancer, he left her and got married to another woman during the course of her treatment. When Bibi Zulaikha received a donation of about $300 from her cousins, who live outside of Afghanistan, the husband took that money and spent it on his new wife. Bibi Zuleikha, like many other patients, was left without any money. Even though the Cancer Center in Jumhuriat Hospital managed to raise some funds for her treatment, the mental stress exacerbated her illness. At last, news of Bibi Zulaikha’s death was received by the Cancer Center.

Cancer patients develop psychological and emotional problems when they experience bullying, sometimes even by their close family members. This may lead to low self-esteem, poor self-­ image, an inferiority complex, or poor body image due to deformities that may appear with the progression of illness. Even though there are families that have a very good understanding of how to deal with such patients, most families, particularly those who are less educated and poor, have problems coping with terminally ill patients.

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452 the Cancer Center. She was telling her psychologist that she was at the end stage of her life and she would soon die. Her children would be left behind without anyone to take care of them. She said she could not serve herself nor her family. Her sister-­ in-­law would tell her that God had seen her sins and that is why He cursed her with cancer. She would curse herself and wished to die sooner. Close to her death, when she was receiving supportive treatment at home, she wished to see her psychotherapist; however, even her last wish was not fulfilled. The psychotherapist received a phone call from Zainab’s mother that she was no longer in this world.

Suicidal thoughts while going through cancer, especially during the palliative stages, are exceedingly common. In Afghanistan, dozens of problems are found to contribute to such thoughts among cancer patients; poverty or a low socioeconomic situation are probably the biggest factors. In addition, the failure to recognize psychological disorders and the value of psychosocial support, the stigma surrounding receipt of mental health support, the presence of generalized fears, mood disturbances, low self-esteem, and poor self-image each play an important role in giving up on life. Some other personal problems include unemployment, disturbed sexual relations, self-neglect, distressing interpersonal relationships, anger outbursts, poor parenting, and communication gaps. Some social issues include the failure of families to resolve long-­ term conflicts in patients’ lives, forced marriages (particularly at a young age), gender inequality, being the only earning member of the family, indecisiveness about initiating treatment, and isolation and a limited social circle. In addition to all the above problems, side effects and complications of treatment, especially deformity and loss of hair, contribute to suicidal thoughts. At the end stages, many take their ill family member to a hospital rather than letting them stay at home even when these patients can continue the necessary supportive treatment at home. There are several reasons why end-of-life patients are taken to the hospital; one of the main reasons is the families’ fear of denigration from relatives  – that the family did not spend enough money or value the patient enough, and let the patient die at home; sometimes, families try their

best and wish to spend more money if there is a chance of saving the patient; at other times, due to lack of caregivers at home or the overburden on one caregiver, the patient is taken to a healthcare facility.

Challenges to Palliative Care Even though some palliative care services are provided to cancer patients at end-of-life and at different levels of health facilities, the idea of palliative care is quite new in Afghanistan. The barriers to establishing and implementing palliative care in Afghanistan can generally be categorized into one of three areas: the lack of government commitment, lack of education, and lack of medicine.

Lack of Government Commitment Considering the fact that the MoPH subsidizes only 5% of the country’s health expenditure, it is extremely difficult to convince the leadership to prioritize cancer in general and palliative care in particular. It was only five years ago that the MoPH agreed to provide limited cancer care services in the country. Currently, people wait for weeks to receive their curative or palliative chemotherapy at the Cancer Center in Jumhuriat Hospital because of the limited number of beds. Therefore, the Cancer Center cannot admit most patients that require palliative care services who are referred from across the country. Since 2018, NCCP has been advocating for funding from the Ministry of Finance to establish a small palliative care unit at the Cancer Center.

Lack of Education Palliative care is not taught in medical schools nor during residency programs. The Mental Health Department at the MoPH has trained hundreds of psychosocial counselors through its one-­ year program; however, they are not trained in palliative care. There is currently only one clini-

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cal psychologist who provides psychosocial counselling to cancer patients. To the best of our knowledge, there are no doctors, nurses, pharmacists, or psychosocial counsellors trained in palliative care in Afghanistan.

• To develop pain management guidelines and SOPs • To provide palliative care training to existing healthcare providers, especially to nurses, midwives, psychosocial counsellors, and community health workers (CHWs) around the country Lack of Medicine • To educate people about palliative care • To include more analgesics, especially opiBased on the NLML and EML, there are very oids, in the NLML and EML few drugs that may be procured and administered • To allocate special funding for training healthby public health facilities. As a result, many care providers in palliative care outside the cheap, effective, safe, and conveniently-­ country [23–25] administered medicines and their different formulations are not available on the market. For example, controlled and immediate-release oral morphine listed in the Essential Package of References Palliative Care are not available in Afghanistan.

Recommendations for Implementing Palliative Care Since the establishment of the Cancer Diagnosis and Treatment Project in 2016 and NCCP in 2017, a number of initiatives have been taken. One of the most important achievements was the inclusion of 34 chemo-drugs in the NLML.  In addition, palliative care interventions were included in the new health system package, the Integrated Package of Essential Health Services for Afghanistan. (IPHS). Besides, considering its limited resources, the Cancer Center has provided palliative care services to hundreds of cancer patients. For the first time, the WHO’s pain management ladder approach is implemented at the Cancer Center. As most cancer patients are diagnosed at advanced stages, palliative care services need to be fully integrated in the healthcare system and implemented. In order to do so, the following interventions are needed. • To include palliative care in the National Health Policy and Strategy • To integrate palliative care into BPHS, EPHS, and hospitals at the national level • To allocate a budget for the implementation of palliative care

1. Afghanistan Mortality Survey. 2010. Demographic health program. https://dhsprogram.com/pubs/pdf/ fr248/fr248.pdf. Accessed 24 Jan 2020. 2. The World Bank. Afghanistan. https://data.worldbank.org/country/afghanistan. Accessed 21 Jan 2020. 3. Afghanistan Living Conditions Survey, 2016–17. National statistics and information authority, Kabul. https://www.nsia.gov.af:8080/wp-content/ uploads/2019/04/ALCS-2016-17-Analysis-report-. pdf. Accessed 23 Jan 2020. 4. Afghanistan Development Update. 2018. The World Bank. http://documents.worldbank.org/curated/ en/985851533222840038/Afghanistan-developmentupdate. Accessed 23 Jan 2020. 5. National Health Strategy 2016–2017. Ministry of Public Health. http://old.moph.gov.af/en/page/579. Accessed 25 Jan 2020. 6. Afghanistan Health Survey. 2018. Royal Tropical Institute, Amsterdam. https://www.kit.nl/wp-content/ uploads/2019/07/AHS-2018-report-FINAL-15-4-2019. pdf. Accessed 25 Jan 2020. 7. Afghanistan Demographic and Health Survey. 2015. Demographic health program. https://dhsprogram. com/pubs/pdf/FR323/FR323.pdf. Accessed 24 January 2020. 8. Afghanistan Services Provision Assessment. 2018. Demographic Health Program. https://www.dhsprogram.com/pubs/pdf/SPA31/SPA31.pdf. Accessed 27 Jan 2020. 9. Health Financing Policy 2012–2020. 2012. Ministry of Public Health. http://old.moph.gov.af/Content/ files/ Health%20Financing % 20Policy%2020122020.pdf. Accessed 25 Jan 2020. 10. Afghanistan National Health Accounts with Disease Accounts, 2017. Ministry of Public Health, Kabul. https://moph.gov.af/sites/default/files/2019-09/ Afghanistan% 20National %20Health%20Accounts%

454 202017Final%20% 28Annexes%29%2024-8-2019% 20-min.pdf. Accessed 23 Jan 2020. 11. International Agency for Research on Cancer. 2018. https://gco.iarc.fr/today/data/factsheets/populations/4afghanistan-fact-sheets.pdf. Accessed on 29 Jan 2020. 12. National Cancer Control Program. 2019. Ministry of public health. https://moph.gov.af/index.php/en/ national-cancer-control-program-nccp. Accessed 15 Feb 2020. 13. National Cancer Control Program Afghanistan. 2020. Union for international cancer control. https://www. uicc.org/membership/national-cancer-control-program-afghanistan. Accessed 16 Jan 2020. 14. Stephen RC, Maria C, Sharon B, David C, James C, Dennis F, et al. Global atlas of palliative care at the end of life. World Health Organization. 2014. https:// www.who.int/nmh/Global_Atlas_of_Palliative_Care. pdf. Accessed 30 Jan 2020. 15. Thomas L, Stephen C, David C.  Mapping levels of palliative care development: a global update. J Pain Symptom Manag. 2013;45(6):1094–106. https://doi. org/10.1016/j.jpainsymman.2012.05.011. 16. Alaina dalton. Hamdardi development of a hospice program in Afghanistan. A pilot project. Slideplayer. 2011. https://slideplayer.com/slide/10342478/ Accessed 2 Feb 2020. 17. National Medicines and Healthcare Products Regulatory Authority. 2019. https://nmhra.gov.af/. Accessed 16 Feb 2020. 18. National Licensed Medicines List of Afghanistan. 2014. [Updated 2018]. General directorate of pharmaceutical affairs. http://gdpa.gov.af/Content/ Media/Documents/AfghanistanLML_online

M. Abdullah et al. 2015012712201511723411553325325.pdf. Accessed 25 Jan 2020. 19. National Essential Medicines List of Afghanistan. 2014. World Health Organization. https://apps.who. int/medicinedocs/documents/s21737en /s21737en. pdf. Accessed 25 Jan 2020. 20. Afghanistan National Medicine Policy 2014–2019. 2014. General Directorate of Pharmaceutical Affairs. http://gdpa.gov.af/Content/Media/Documents/NMP _E_2014_20193010201473846558553325325.pdf. Accessed 25 Jan 2020. 21. Eric LK, Xiaoxiao K, Stéphane V, Hector A, Afsan B, Oscar M, et  al. Palliative care and pain control. Disease control priorities: improving health and reducing poverty. National Center for Biotechnology Information. 2018. https://www.ncbi.nlm.nih.gov/ books/NBK525289/pdf/Bookshelf_NBK525289.pdf. Accessed 27 Jan 2020. 22. World Health Organization Model List of Essential Medicines. 2019. https://apps.who.int/iris/bitstream/ handle/10665/325771/WHO-MVP-EMP-IAU2019.06-eng.pdf. Accessed 30 Jan 2020. 23. James C, Hellen G, Judith W.  Cancer pain relief. Disease control priorities. 2018. http://dcp-3.org/sites/ default/files/chapters/DCP3 %20CancerCh%209.pdf. Accessed 27 Jan 2020. 24. Anderson RE, Grant L.  What is the value of palliative care provision in low-resource settings? Br Med J. 2016;2(1) https://doi.org/10.1136/ bmjgh-2016-000139. 25. Henry D. Palliative care: what approaches are suitable in developing countries? Br J Haematol. 2011;154(6):728– 35. https://doi.org/10.1111/j.1365-2141.2011.08764.x.

Part XXVIII Central Asia: Armenia

Palliative Care for Cancer Patients in Armenia: A Silent Pain Narine Movsesyan, Nune Karapetyan, Gevorg Tamamyan, and Jemma Arakelyan

Geography and the Sociodemographic Situation The Republic of Armenia (RA) is located in South Caucasus. The RA borders with Georgia, Iran, Turkey, and Azerbaijan [1]. The total population of the country is 2.97  million. There is a slight female predominance: the gender ratio is 0.89 (53% female, 43% male) [2, 3]. From the beginning of RA’s independency (in 1991), there was a number of obstacles to the country’s development, including war, natural disasters, and the global financial crisis. In 1990, the gross domestic product (GDP) was US$ 2.26  billion. There has been remarkable progress in the economy since the end of 2018 when the new parliaN. Movsesyan Department of Anesthesiology and Intensive Care, Yerevan State Medical University, Yerevan, Armenia N. Karapetyan · J. Arakelyan (*) Department of Oncology, Yerevan State Medical University, Yerevan, Armenia Chemotherapy Department of Adult Solid Tumors, Hematology Center after Prof. R. Yeolyan, Yerevan, Armenia G. Tamamyan The Pediatric Cancer and Blood Disorders Center of Armenia, Hematology Center after Prof. R. Yeolyan, Yerevan, Armenia Department of Pediatric Hematology and Oncology, Yerevan State Medical University, Yerevan, Armenia

mentary government was formed after the Velvet Revolution. Currently, Armenia is considered to be an upper-middle-­income country, and the GDP was expected to reach US$ 13.673  billion dollars in 2019; the gross national income (GNI) per capita was US$ 4680 in 2019 [4, 5]. During the years of the Soviet Union, Armenia’s health-care system had a centralized, tertiary careoriented structure; the state funding for health-care services were decided by the higher governing bodies. Patients were not informed regarding the available health-care options, such as choosing their physicians, and the hospitals were not prepared to compete and adapt to the changing demands of the market. After the independence of the Republic of Armenia in 1991, the health-care system faced a number of challenges, including war, earthquakes, and a socio-economic crisis. In parallel with the above-mentioned challenges, the health-­ care system experienced a number of reforms. Nowadays, public, primary and secondary health-­care facilities are administered by the Ministry of Health (MoH) of RA and local governance bodies, such as municipalities. Along with public health-care facilities, there are a number of private ones. Health care is paid for by state and local budgets, medical insurance and out-of-­ pocket payments, including co-payments [7]. However, the majority of health-care services provided are not subsidized and are covered by the patients themselves. There is, however, a list of people with certain social and health conditions

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whose health expenses are partially or fully funded by the state budget, known as the Basic Benefits Package (BBP). The BBP utilizes public funds to cover maternity, emergency, primary, pediatric, and oncological health-care services; the socially vulnerable population also receives health-care services under the BBP. Some of these services are fully covered, while others are partially covered (as with the treatment of oncological diseases) or require a co-payment. Most palliative care is not covered by the BBP [6–8].

also be due to the increase in absolute numbers, meaning more people get cancer because of the aging population and increase in risk factors [19]. One of the leading identified risk factors for cancer is tobacco use [13–15]. In Armenia, GLOBOCAN 2018 reported that the mortality and morbidity rate of lung cancer, specifically, were 20% and 15.6%, respectively. According to the WHO Global Health Observatory data repository, in Armenia in 2018, the age standardized prevalence of smokers aged 15 years and older was 26.8%, meaning 52.1% of males and 1.5% of females were current smokers [16]. At the same Cancer in Armenia: Epidemiological time, the STEPS (Noncommunicable Disease Risk Factor Survey, part of the STEPwise approach to Overview surveillance) project survey indicated that the numEach year, approximately 18.1 million new can- ber of males and females exposed to second-hand cer cases and more than 9.6 million cancer-­related smoking at home and indoor workplaces are 56.4% deaths are reported worldwide. 70% of these and 26.6% of the population, respectively [17]. deaths resulted from malignant tumors and occur Among the other risk factors, infections are in low- and middle-income countries [9, 10]. considered responsible for 15% of new cancer It is estimated that the number of cancer cases cases in the world. In Armenia, infections contribwill increase by 63% by 2040, which will pose ute to 12.2% of cancer cases [18]. Human papiladditional burdens on health systems and require lomavirus infection, hepatitis B and C viruses, the additional measures to improve the effectiveness Epstein-Barr virus, and others increase the risk of of patient care [11]. cancer. Also, alcohol abuse, malnutrition, ultraviolet radiation, obesity, sedentary lifestyle, etc. contribute to cancer development [13]. Trends in Morbidity, Prevalence, About 90% of all deaths in Armenia are attributable to noncommunicable diseases (NCDs) and and Mortality of NCDs the probability of premature mortality (up to the in the Republic of Armenia (RA) age of 70) caused by NCDs accounts for 22% [20]. Over the last five years, the analysis of cancer In recent years, the incidence of cancer reported among the RA population has somewhat stabi- mortality rates has shown positive dynamics lized. For example, in 2014 the number of first-­ (Tables 1 and 2) [12]. time tumors diagnosed was 8365, and in 2017 it was 8389 (males 50.3%), increasing by only 0.02%. At the same time, in 2017 the number of Cancer Types registered cases increased by 14% (compared to 2008) and by 63% (compared to 1998) [12]. This In 2018, the five most common cancer types sited could be attributable to the improvements in in Armenia were lung (1375 cases), breast (1054 diagnostics, quality, and accessibility of health-­ cases), colorectal (990 cases), prostate (636 care services and better registration, but could cases), and stomach (586 cases) [21]. Table 1  Mortality structure of the RA population by causes of death [12] Cause of death CSD (cause-specific death) Malignant tumors Respiratory diseases Diabetes mellitus

2013 12,960 5589 1645 1305

2014 13,268 5685 1862 1191

2015 12,817 6069 2126 1276

2016 13,571 5662 2148 1171

2017 15,106 5550 1644 809

2018 14,209 5199 1978 579

Dynamics 897 ↓351 ↓334 ↓230

RA Marz RA, Total Yerevan Aragatsotn Ararat Armavir Gegharkunik Lori Kotayk Shirak Syunik Vayots Dzor Tavush

b

a

Per 100,000 population Absolute numbers

№ 1 2 3 4 5 6 7 8 9 10 11 12

2013 I.a 1849 2109 1379 1972 1408 1116 2342 183 1998 172 1712 1391

Nb 5589 2242 181 511 374 261 545 467 498 243 89 178

2014 I. 1886 2053 1555 1575 1434 1203 2629 1855 2102 229 1802 1566 N 5685 2196 205 410 383 281 603 473 520 322 93 199

Table 2  Mortality dynamics of malignant tumors in Armenia, 2013–2018 [12] 2015 I. 202 2129 1769 1757 1552 1463 2799 219 2263 2125 2114 1546 N 6069 2283 231 456 414 340 634 557 554 297 108 195

2016 I. 1892 1886 1656 1596 1476 1605 2561 2183 2148 2213 1465 176 N 5662 2027 215 413 393 271 571 553 518 308 74 220

2017 I. 186.3 183.5 186.2 149.2 155.4 155.1 267.8 204.2 222.9 201.9 150.1 158.1 N 5550 1976 238 385 412 357 587 515 529 280 75 196

2018 I. 175.1 1768 1964 1240 1294 1624 2597 1848 2061 1587 1643 1619

N 5199 1909 248 319 342 372 562 465 483 219 81 199

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Predictive Assessment of Disease In 2016, it was reported that 10.97% of the RA population was age 65 years and older, and in 2018 this increased to 11.25%, or 98,000 more people [22], bringing Armenia to the top of the list of aging societies. The UN Population Fund forecasts indicate that Armenia will soon break that threshold, predicting that by 2050, those over 65 will make up more than 22% of the population [23, 24]. Currently in Armenia, the rate of cancer morbidity is high, and is expected to increase. It is predicted that the number of incidents of malignant neoplasms will reach 9915  in 2025, compared to the baseline of 8835 cases in 2018 [25]. Various factors contribute to these tendencies, including increasing demographic indicators. At the same time, there is a high prevalence of various risk factors responsible for the increased cancer morbidity and mortality rates, such as high body mass index, poor diet, lack of physical activity, tobacco use, and alcohol abuse.

Diagnostic Phase The increased probability of longer survival rates for patients with malignant tumors is largely due to the greater number of options for early detection. It is concerning that in 2017  in Armenia, only 44.7% of all types of malignant tumors were diagnosed at Phases I and II, and 56.3% were diagnosed at Phases III and IV (Table  3).

Furthermore, 68% of tracheal, bronchial, and lung cancers, 66% of stomach cancers, and 44% of colorectal and prostate cancers were detected at stage IV. Early detection of cervical cancer is also low. There has been positive progress in the early diagnosis of breast and bladder cancers, where 74% and 66% were found in stages I–II, respectively [12]. Considering the high prevalence of noncommunicable diseases and its increasing tendency in Armenia, a large number of patients suffering from pain, disabilities, etc., need qualified palliative care.

 alliative Care: General Principles P and Epidemiology According to the World Health Organization (WHO), “Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-­ threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual [26]”. In addition to the foregoing, it should also be noted that the WHO has recognized palliative care as an integral component of health care that should be accessible to those in need and in urgent situations, including those with limited resources [27]. One of the key components of palliative care is pain management. Globally, about 80% of patients

Table 3  Stage of detection for most common malignant tumors, 2018

Tumor type Breast Colon Trachea, bronchi, lungs Prostate Cervix Uterus Ovary Stomach Bladder

Stage I–II n 751 14 119 73 68 138 41 92 239

% 73.6 35.6 18.6 33 38 55 37 17 67

III n 66 124 106 52 101 31 57 57 31

% 6.5 30.8 16.6 24 43 16 35 17 10

IV n 204 135 414 95 45 57 46 221 70

% 20 33.6 64.8 44 19 29 28 66 23

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Progress has been made due to the joint advocacy of international and local NGOs and local sectoral health-care providers. However, the study revealed that the lack of palliative care and accessibility to painkillers are still prevalent throughout the country [6, 31]. At the beginning of the 2010s, there were major legislative improvements in the field of palliative medicine. On August 15, 2012, the Government of Armenia signed the Palliative Care Concept Paper and its Action Plan [32]. On December 11, 2014, the Ministry of Health approved the “Clinical Guidelines for Prescribing Medicines and Psychotropic Drugs for Palliative Care and Services.” After the legislative changes from 2011 to 2014, within the framework of the Global Fund’s “Health System Strengthening” grant program for four medical institutions of the Republic of Armenia: the National Center of Oncology of the RA MoH; the Heratsi Hospital Complex of Yerevan State Medical University; the Vanadzor Palliative Care in Armenia Hospital Complex in Lori Marz; and the Ararat Medical Center in Ararat Marz, palliative care After the collapse of the Soviet Union, the health-­ experimental programs were carried out in comcare system in Armenia was devastated. The main bination with home care, outpatient and inpatient reason was the centralized structure of health-­ services when needed. These programs were care system that required huge funding that can- instructed to perform need assessments in terms not be afforded by a state budget at that time. of staff, expenditures, etc., for the full implemenDuring that period, palliative care was performed tation of palliative care in Armenia. The informaon a voluntary basis by certain individuals. tion collected was then incorporated into a In 1993, given the impact of pain on a person’s number of legislative regulations. health and quality of life, the Single Convention In 2012, a 10-bed palliative care department on opioids has been implemented. The conven- was established at the National Center of tion states that “the medical use of narcotic drugs Oncology, but the provided services were not in continues to be indispensable for the relief of high demand and the unit was soon dissolved. pain and suffering and that adequate provision The low demand was due to, among other reamust be made to ensure the availability of nar- sons, the fact that the palliative care provided in cotic drugs for such purposes” [30]. the unit was not included in the Basic Benefit In 2009–2010, to highlight the role and pur- Package (BBP) and was funded based on out-of-­ pose of palliative care in Armenia, Stephen pocket payments. R.  Connor, an international palliative care conIn 2017, a state program for palliative medical sultant, conducted a study on “Palliative Care care and the development of corresponding serNeeds Assessment in Armenia”, under the vices was implemented; it intended to establish patronage of the Open Society Foundation. It was and introduce mechanisms for the provision of found that 18,000 people need palliative care palliative medical care in inpatient and outpatient annually. The research was followed by the services. It also planned to improve legislation, implementation of palliative care in the country. develop clinical guidelines on palliative care, and with malignant tumors and AIDS, and 67% of patients with cardiovascular and chronic obstructive pulmonary diseases suffer from chronic pain at the late stages of the disease [28]. In 2011, WHO estimated that annually, 5.5  million latestage cancer patients and 1 million patients with end-stage HIV/AIDS worldwide experience moderate to severe pain but have no access to adequate pain treatment [27]. Sixty to 80% of patients with malignant tumors suffer from chronic pain. In the case of advanced cancer, the number of patients with chronic pain reaches 45–100%, with 20–40% of the patients not controlling the pain. Moderate to severe pain has a profound effect on the quality of life, so permanent pain has a number of physical, psychological, and social consequences. It can reduce a person’s mobility and result in loss of strength, weaken the immune system, and limit the ability to eat, concentrate, sleep, and interact with others [29].

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to include this branch of medicine into ­postgraduate studies as well as other higher education programs. Currently, the Ministry of Health (MoH) of the RA has launched a pilot project in which mobile palliative care will be delivered in two primary health-care facilities in Yerevan. The service is covered by the BBP.  In 2020, the MoH plans to establish inpatient units/hospices at hospitals licensed to provide palliative care. Another initiative aiming to address pediatric cancer palliative care has been carried out by the City of Smile Charitable Foundation and Hematology Center after Prof. R.H.Yeolyan. A five-bed, state-of-the-art pediatric palliative care clinic is currently under construction at the Hematology Center, where the only Pediatric Cancer and Blood Disorders Center of Armenia is located, and it is expected to begin operating in June 2020. The design and implementation of this program was corroborated by world-known experts from St. Jude Children’s Research Hospital (SJCRH, USA). These specialists who will be running the clinic are involved in palliative care improvement programs within the framework of Eurasian Alliance for Pediatric Oncology, under the umbrella of SJCRH. The overwhelming majority of the financial resources directed to implement palliative care programs have been funded by international organizations. Hence, the portion of the total budget envisaged for the health sector must be reviewed and funds should be allocated to provide palliative care services within existing resources. Despite the fact that the use of drugs for pain relief is not prohibited in Armenia by either domestic legislation or international regulations, the analysis of responses to inquiries and real-life cases have revealed inadequate pain management among patients in Armenia who need palliative care.

equivalent Adequacy Consumption Measure (ACM) per capita was found to be 0.88  mg., while the actual need of the morphine equivalents in the country was 305.56 mg [33]. One of the conditions for providing access to pain control within the framework of palliative care is the compatibility of the medications available with the WHO Model List of Essential Medicines. The opioid analgesics included in this list are as follows [34]:

 vailability of Drugs: Morphine A Need Assessment in RA

Education and Training of the Medical Staff

• Codeine phosphate • Fentanyl patch • Morphine hydrochloride or morphine sulphate for injections, pills, intravenous solutions and granules, oral solution • Methadone Most of the opioid analgesics (morphine for injection, and oral, methadone) intended for pain relief and palliative care were approved by the RA MoH in 2018 and are fully in line with the WHO Model List of Essential Medicines [35]. According to the opioid prescription regulations, the drugs are discharged without a commission. The prescription for drugs containing narcotics and psychotropic substances must be written by the treating physician (regardless of specialty), and then endorsed by the director of the medical institution. The prescription for the dose and quantity approved by the physician is valid for 10 days. Legislation has been approved for the assessment and management guidelines for patients’ pain within palliative care and services, by which the health-care provider can determine what type of medication and dosage should be assigned to the patient. However, even after these changes, health-care providers often do not prescribe narcotic painkillers and avoid prescribing large doses [36].

The use of opioid analgesics, especially mor- The provision of palliative care depends on many phine, in palliative care for pain control is factors, including financial capabilities, staffing, extremely low in Armenia. In 2010, the morphine-­ and more.

Palliative Care for Cancer Patients in Armenia: A Silent Pain

Palliative care in Armenia is much more advanced than in many countries of the former Soviet Union, as, in 2017, numerous legislative regulations were put into place to strengthen and facilitate the implementation of palliative care. However, there are some obstacles that have led to the delay in the widespread introduction of palliative care such as the lack of awareness and education of the staff. In 2017, the only postgraduate program for nurses and physicians specializing in palliative care was in Yerevan State Medical University (YSMU). The duration of the program was four months for physicians and three months for nurses. There is currently only one course on palliative medicine in YSMU, which was introduced in 2017 for primary care fellows and taught during the second year of clinical residency. Only 10 second-year interns specializing in family medicine passed this course. Programs for specialized and advanced training of graduate students were developed at YSMU.  Between 2016 and 2018, a total of 29 nurses attended the one- and two-week training courses. In addition, from 2010 to 2017, a number of NGOs, with assistance from the Open Society Foundation of RA, provided one- and two-week trainings courses to primary care physicians [31]. According to local experts, there currently 20 doctors and 20 nurses specialized in the field of palliative medicine in Armenia, but only a few of them actually practice palliative care. Currently, there are no educational programs on palliative care in Armenia. Principally, in countries where palliative medicine is an integral part of health care, there is a three-tiered educational approach: palliative care is first taught at university, then as a postgraduate training program, and thereafter, those physicians who wish to specialize in palliative care attend subspecialty courses [37].

Gaps in Palliative Care in Armenia For most societies and health-care providers, palliative care is generally viewed as an abstract idea or service, separate from public life; however, the social component is a large part of palliative care.

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Over the years, adapting and improving procedures to facilitate access to pain relievers in medical institutions has been hampered due to various factors: among them are a lack of guidelines for the use of narcotic substances for medical purposes, supervisory actions of the police and fear of the medical staff, low awareness of patients and their families about drug use for medical purposes, as well as the shortage of trained doctors. The country does not have an adequate amount of specialists or integrated sub-specialty projects, nor the general vision for how palliative care should be integrated into the medical field or society, and no work is being carried out to rectify this matter. Legislative and policy reforms for palliative care in the RA were introduced in 2008. However, they have not been sufficient to ensure availability and accessibility of the service. Even if all the necessary legislative changes are made and the relevant medical institutions are licensed to provide palliative care services, it will still not be possible to ensure full palliative care as long as there are no specialists with proper specialized education. The problem lies in that the professionals involved in the palliative care team are the primary source of information for the patients. Lack of awareness and education among health-­ care personnel results in misconception among patients and their family members about the different components of palliative care. It is believed that only terminally ill patients receive this care. Therefore, it is extremely important to include well-trained, knowledgeable professionals in the team. Also, it is necessary to provide regular training opportunities for all team members [38]. A number of NGOs performed field visits and face-to-face interviews to assess the palliative care provided in Armenia. The results showed that majority of patients are in need of palliative care and do not receive services that meet the WHO standards, including proper pain relief [38]. The reason for this disparity is the fact that measures aimed to ensure patients’ access to opioid analgesics are in constant competition with the policy of combating drug trafficking [36]. There are few countries in the world that have

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managed to maintain a balance between proper patient pain and drug control. Most countries prefer restrictive policies for opioid analgesics utilization and maintain strict oversight. For this reason, in the most former Soviet Union countries, patients are deprived of the opportunity to live without pain [39, 40]. Conversely, there are countries where the liberalization and excessive prevalence of opioid painkillers have caused problems such as deaths due to opioid overdose and physician-mediated drug dependence, mainly related to unnecessary prescriptions [41]. Therefore, palliative care may be fully introduced if the role of health-care policymakers and authorities responsible for carrying these out  – the Ministry of Health, police officers dealing with drug trafficking, as well as inpatient and outpatient (including mobile) palliative care providers, are fulfilled properly and harmoniously, and the actions of one interested party do not limit the responsibilities and regular activities of the other.

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Part XXIX Central Asia: Kazakhstan

Mobile Teams in Kazakhstan: Improving Cancer Patients’ Access to Palliative Care Gulnara Kunirova, Dilyara Kaidarova, and Tolganai Ansatbayeva

Introduction Cancer is the second leading cause of premature death in Kazakhstan with the incidence rates increasing by approximately 1–1.5% annually. In 2018, cancer claimed 14,369 lives of Kazakhstan citizens, at the rate of approximately 39 people a day; 32,228 new cases of the disease were registered. The total number of patients receiving cancer care by the end of 2018 was 181,202. Within the last 25  years, the overall cancer death rates have dropped by 29% due to significant improvements in prevention and early detection. However, the percentage of late stage diagnosis remains relatively high at 37–40% [2]. Even though most cancers are not immediately fatal, many patients experience months to years of life-limiting illness with a relatively

G. Kunirova (*) Kazakhstan Association for Palliative Care (KAPC), Together Against Cancer Foundation, International Association for Hospice and Palliative Care (IAHPC), Almaty, Republic of Kazakhstan D. Kaidarova Kazakh Institute of Oncology and Radiology, Kazakhstan Association of Oncologists, National Academy of Sciences, Almaty, Republic of Kazakhstan T. Ansatbayeva Almaty Oncology Center, Kazakh Institute of Oncology and Radiology, Almaty, Republic of Kazakhstan

brief period of decline prior to death, when they will need palliative care at a certain point. Since the early 2000s, in-patient hospice services in the country have been available to provide nursing care and symptom management only to a limited number of cancer patients approaching end of life. Located very sporadically across the country, without being justified by any statistical data, they served only the needs of locally residing citizens. Long distances between province centers (where the majority of health-care facilities are located) and rural districts (some may be as far away as 600 kilometers), added to the inequality of access to hospice care. The number of hospice beds did not change much within two decades, with only one new hospice, opened in Taraz in 2017. To address the urgent deficit of palliative beds, 208 new beds were deployed during the last 5 to 6  years in 13 out of 17 regional cancer centers under the overpassed National Cancer Care Development Plan for 2012–2016 [3]. Unintentionally, the inclusion of palliative care into the clinical practice of oncology centers highlighted the difference between end-of-life care provided in hospices and earlier palliative care provided in specialized cancer treatment facilities. It became more obvious that patients should not have to choose between treatment with curative intent or comfort care, and there is a need for both, in varying degrees, throughout the course of cancer, whether the eventual

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o­ utcome is long-term survival or death [3]. While hospices provide care for people from the point at which they can no longer receive any specialist anticancer treatment to the end of their lives, palliative care wards in cancer clinics provide symptomatic and pain treatment to patients still receiving chemotherapy or radiation therapy aimed at cure [4]. As of today, the total number of palliative care beds available for cancer patients is 354, including hospices (146 beds) and special wards in cancer clinics (208 beds). However, the estimated need in in-patient palliative care for cancer patients is about 810 beds. This estimation is based upon the National Standard of Organization of Palliative Care, which provides for 30 in-­ patient palliative beds to be established per 400,000 of population [5], and the assumption that 60% of patients in need of palliative care in Kazakhstan are those with cancer. Concurrently with the opening of in-patient palliative care wards in oncology centers, various nongovernmental organizations in different parts of the country started their home-based services for those patients who were no longer receiving in-patient specialist care and had no access to hospice facilities. Although only few of them have proven their financial and institutional sustainability, their contribution to the development of outpatient palliative care services in Kazakhstan was outstanding. In fact, they set a new model of holistic multidisciplinary in-home palliative care to patients, proving to the government that it is economically efficient, socially beneficial, and humane. As an example, the Almaty Mobile Team was launched in December of 2013  in Kazakhstan’s biggest city of 1,777,000 people. During the first 2 years, it functioned as a pilot project, funded by the Open Society Foundation, but later the service became part of the Almaty Oncology Center. Due to the continuing support of the Together Against Cancer Foundation, today, families of cancer patients are able to use functional beds, oxygen concentrators, wheelchairs, walking frames, gel mattresses preventing bed sores, folding bathtubs, etc., for free. The Foundation also provides methodological assistance to newly

opening mobile teams across the country and conducts training courses for palliative care specialists. To date, over 7000 home visits were made by the Almaty Mobile Team, and each year the number of visits almost doubled due to better awareness among medical community and public as well as improvement of referral procedures.

A “Good Care” Case At 09:15 a.m. the hotline operator of the Almaty Mobile Team received a request from a district oncologist. Each primary care oncologist can place a formalized request for Mobile Team visit through a WhatsApp group or by email. Family carers can also make their requests through a hotline telephone number. The operator collects and processes requests. Depending on the urgent need of the family, at first visit the doctor can be accompanied by a nurse and/or a psychologist and/or a social worker. Although the Mobile Team is not an emergency ambulance but a visiting service, some calls require urgent reaction (Fig. 1). Т. was a 59-year-old driver with a Stage 3 Pancoast tumor (a rare form of lung cancer) with bone metastasis. He looked exhausted after 19 cycles of chemotherapy. He was still receiving bisphosphonates and targeted therapy, but his condition had significantly deteriorating in the last three days. At the time of first visit, he had multiple complaints: breathlessness even at rest, anxiety, lack of appetite due to nausea, sleep disorder, irritability, anxiety, constipation, and ­

Fig. 1  A local bank sponsored the purchase of a car for the Almaty Mobile Team

Mobile Teams in Kazakhstan: Improving Cancer Patients’ Access to Palliative Care

fatigue. On top of all, his pain score was 9/10 and was characterized as excruciating, persistent, multiple, irradiating, burning, and intensifying with movement. Tramadol, a weak opioid used for treatment of moderate pain given by the physician of the district primary care clinic to which T. was assigned, had no effect. The doctor was supported by the psychologist at her first visit, and while the doctor talked to the patient, conducted physical examination, provided necessary care, and administered medication to ease pain and breathlessness, the psychologist worked with the wife and children. She assessed the psychosocial needs of the family and answered their questions. Through the 45-minute visit, one could notice the change in the physical and emotional condition of the patient. The family was left with new medication prescriptions and corrected dosage of previously prescribed painkillers, instructions concerning care, and necessary telephone numbers for emergency calls. For the first time in many weeks, the patient gave a weak smile and waved goodbye to his saviors (Fig. 2). During the next 7 days, the patient was visited by the nurse, who made her assessment of the patient’s care needs, administered his daily treatment prescribed by the doctor, taught the family caregivers how to keep the patient clean and provide better care and how to administer medications and help him with everyday procedures.

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On the third day from the first visit, the nurse reported improvement of the quality of life of the patient. He was now able to sleep at night; he started to eat food and his respiratory condition improved. His pain scores had dropped from 8–9 to 3–4. The next visit of the doctor took place 2 weeks later: the pain therapy scheme was corrected and other symptoms, like lymphedema and urinary difficulties, were addressed. The family also asked for the support of the social worker and the psychologist. When T.’s pain and breathlessness worsened again after 5  weeks, he was switched to morphine. Adjuvants and oxygen therapy were added. A portable oxygen concentrator, a special mattress to prevent the bedsores and diapers were provided for free by the Together Against Cancer Foundation. The patient was under the patronage of the Mobile Team for 8.5  weeks, during which the doctor visited him six times, the nurse 20 times, the psychologist five times, and the social worker two times. All team members were available for consultations at certain hours. T. passed away on Sunday. His wife wrote a little note: “Dear Doctor Tolganai, last night my husband passed away. There was no pain, he wasn’t suffocating, his heart just failed. Thank you for being with us during this difficult time. There is no way we could get through it without your team. What you do is priceless.”

A “Bad Care” Case

Fig. 2  Physician, psychologist, and nurse visiting the patient in Almaty

Around the same time, in the small town of Shemonaikha, 1270 kilometers away from Almaty (equivalent to the driving distance between Paris and Madrid), a man was suffering from severe pain. B. was a 57-year-old electrical engineer recently diagnosed with late stage thyroid cancer. He was discharged home from the oncology center, where he received chemotherapy, with a metastasis in his lungs and progressive tumor intoxication. Shemonaikha is the center of a rural district with a population of only 44,350 people. There is

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a Central District Hospital, which includes a local network of small primary care facilities, but the closest palliative care ward is located 110 kilometers away, in the city of Ust-Kamenogorsk. In order to support his family, B. had to work in spite of his rapidly deteriorating health condition. “When things got worse, we could neither get proper help at home, nor have him admitted to the central hospital. There is no oncologist in our hospital or in the local outpatient clinic. A nurse from the outpatient clinic visited us several times to help with care. But every time he was in pain, we’d have to call the ambulance.” Searching for help, B.’s sister found the number of the Kazakhstan Palliative Care Association on the Internet. She had several telephone consultations with the Almaty doctors and received psychological support, but at some point B.’s breathlessness became worse and the family decided to take B. to the palliative care ward in the Ust-Kamenogorsk oncology center. Winters are harsh in Eastern Kazakhstan and the trip was not very easy for the family. Worst of all, the clinic ran out of some drugs, so the relatives had to buy some medicines in the nearby pharmacy. After B. received oxygen and medication, he let his sister go back home. The next day she had to take this long trip once again to spend time with her brother, who died in her arms 30 minutes after she arrived.

Light at the End of the Tunnel Despite the disparity in access to palliative care and multiple challenges to its overall development, the best way to describe the current status of palliative care in Kazakhstan would be with an analogy showing the light at the end of the tunnel. From being nonexistent only 20  years ago, palliative care in Kazakhstan is now moving slowly, but straightforwardly, toward integration into the mainstream health-care system. There are several reasons for optimism on the global and national scale. In 2014, the global resolution on palliative care (WHA67.19) called upon the WHO Member States to improve access to palliative care as a

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core component of health systems, with an emphasis on primary health care and community/ home-based care. In the WHO Global Action Plan for the Prevention and Control of Noncommunicable Diseases 2013–2020, palliative care was clearly recognized as part of the comprehensive services required for noncommunicable diseases. High-quality palliative care is an explicit element of the WHO Framework on integrated people-centered services, approved at the 69th World Health Assembly in 2016 [6]. Palliative care and pain relief are essential elements of universal health coverage (UHC) and a special focus is made on equity for all populations, particularly the poorest and most marginalized, who should be able to access the health-care services that they require [7]. The Lancet Commission on Palliative Care and Pain Relief assessing global palliative care needs was released in October 2017 with the aim of quantifying the heavy burden of serious health-­ related suffering (SHS), identifying an essential package of palliative care medicines and measuring the unmet need for the use of opioids [8]. On October 25, 2018, the Declaration of Astana was approved by the Heads of State and Ministers of Health during the historical Global Conference on Primary Healthcare held in the Kazakhstan capital, Astana (recently renamed to Nur-Sultan). For the first time in history, palliative care was mentioned in the context of universal coverage and primary health care. The Declaration includes the following two references to palliative care: (1) “Promotive, preventive, curative, rehabilitative services and palliative care must be accessible to all”; and (2) under the heading “Build sustainable primary health care” the declaration states: “We will prioritize disease prevention and health promotion and will aim to meet all people’s health needs across the life course through comprehensive preventive, promotive, curative, rehabilitative services and palliative care.” Thus, The Astana Declaration explicitly calls for countries to integrate palliative care into primary health care [9] (Fig. 3). In the 2014 edition of the Global Atlas of Palliative Care at the End of Life, Kazakhstan ranked as a Group 3A country but, according to

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Fig. 4  The UICC President, H.R.H. Princess Dina Mired, Minister of Health, Dr. Yelzhan Birtanov, Director of KazIOR, Acad. Dilyara Kaidarova on the opening of the 2019 World Cancer Leaders’ Summit in Nur-Sultan, Kazakhstan Fig. 3 The IAHPC delegation at the 2019 Global Conference on Primary Healthcare in Astana, Kazakhstan

Stephen Connor, Executive Director of the Worldwide Hospice Palliative Care Alliance (WHPCA), Kazakhstan has risen to a 4A group in the new edition of the Atlas that will be published later in 2020. The 4A group refers to countries where hospice and palliative care services are at the preliminary stage of integration into mainstream service provision. This group of countries is characterized by: the development of a critical mass of palliative care activism in a number of locations; a variety of palliative care providers and types of services; awareness of palliative care on the part of health professionals and local communities; the availability of morphine and some other strong pain-relieving medicines; limited impact of palliative care upon policy; the provision of a substantial number of training and education initiatives by a range of organizations; and interest in the concept of a national palliative care association [10]. This progress was made due to tireless efforts of a group of highly committed individuals and organizations, especially those united under the umbrella of the Kazakhstan Association for Palliative Care (KAPC), which serves as the main driving force of changes in the legislation, meth-

odology, education and training, institutional development, clinical practices, and attitudes of the public to hospice and palliative care (Fig. 4). KAPC was created with the intention to combine efforts of local champions, from Members of Parliament to volunteers, international experts, partner organizations like the Open Society Foundation, IAHPC, WHPCA, EAPC, UICC, ASCO, NIH/NCI, MECC, and many others, to speed up the development of palliative care in Kazakhstan [11]. On the national level, a major change in the health-care system is taking place right now with the transition to insurance medicine and a number of other important developments. The Mandatory Social Health Insurance (MSHI) system was launched on January 1, 2020, under which all citizens and permanent residents of Kazakhstan will have access to two packages of medical care: the state-guaranteed basic package and the health insurance fund package. Palliative care is included in the so-called guaranteed package of medical assistance, which means that it will remain free-of-charge for defined categories of patients irrespective of their status within the insurance system [12]. The growing attention of the oncologists to the problems of incurable cancer patients was demonstrated during the 2019 World Cancer

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Fig. 5  Palliative care champions from KAPC speaking at the International Round Table on access to opioids “Stop My Pain” in Nur-Sultan

Leader’s Summit, hosted by the Kazakh Institute of Oncology and Radiology (KazIOR) in Kazakhstan’s capital, Nur-Sultan, from October 15 to 17; 350 global influencers and leaders in cancer control and public health from 82 countries and from across governments, UN agencies, academia, nonprofit organizations, and private sectors considered the ways in which cancer detection, treatment, and care can contribute to the achievement of Universal Health Coverage [13] (Fig. 5). The Comprehensive Cancer Control Plan for 2018–2022 devotes a special section to the integration of palliative care into cancer care practices. It includes measures aimed at the introduction of mobile teams for incurable patients; training physicians, nurses, psychologists, and social workers; estimation of tariffs for palliative care services; and development of guidelines for service providers and cooperation with NGOs [3]. A broader perspective on future developments of palliative care in the short-term was presented in the Roadmap for the Improvement of Palliative Care in the Republic of Kazakhstan for 2019– 2020, developed and approved by the Ministry of Health of the Republic of Kazakhstan in collaboration with the Kazakh Association for Palliative Care, oncologists, and international experts. The document provides for further amendment of the

legislation and regulations, review of clinical protocols, analysis of the current resources, including human capacity, activities of NGOs, training of regional trainers, raising awareness, etc. The Roadmap contains goals that are achievable in a 2-year period, but these are only initial steps on the way to full integration of palliative care in the health-care system [14].

Advantages and Barriers to the Development of Home-Based Palliative Care in Kazakhstan It would not be an exaggeration to say that the achievement of mutual understanding and the focus on cooperation between all stakeholders was the main breakthrough of recent years. However, we are still facing a lot of challenges, ranging from important political decisions to the everyday delivery of palliative care to patients at all levels of care: primary, secondary, and tertiary. Home-based palliative care is needed for people with various chronic and life-limiting health problems – not only cancer, but many other conditions such as advanced cardiac, renal, and respiratory diseases, HIV/AIDS, and chronic neurological disorders. Based on the work of the Lancet Commission on Global Access to Palliative Care, the total

Mobile Teams in Kazakhstan: Improving Cancer Patients’ Access to Palliative Care

number of patients in need of palliative care in 2015 was estimated at 134,190 patients with serious, life-threatening conditions. Over 55,000 of them were patients with cancer. At this point of time, in-home palliative care is only available to cancer patients in Kazakhstan. The development of mobile teams contributes to the progress of integrating cancer treatment, primary medical care, and palliative care services that are administratively separated. It also opens opportunities for patients to get broader access to consultations with oncology specialists, diagnostic facilities, and minor surgeries. The WHO Guide for Program Managers on Planning and Implementing Palliative Care Services points at a number of advantages of home-based palliative care in many situations. Many patients feel more comfortable in their home than in a health-care setting. In a country like Kazakhstan, where several generations of a family tend to stay together, this is particularly true. A home-based service means that family members are integrated into the process, which, in turn, means that the patient has better access to care. A home-based approach provides advice and support to family members to help them as caregivers, and the home-care team is able to facilitate referral to additional services. While the homebased care helps the family maintain privacy and confidentiality, at the same time it helps to increase community awareness about palliative care. Local mass media, especially social media, contributes a lot to the promotion and dissemination of information about available palliative care services and the feedback stimulates providers to make improvements to patient care [15]. Immediate-release oral morphine was registered in the country over a year ago, thanks to the local producer VivaPharm, but difficulties with supply and distribution still occur at year end and beginning. Besides, physicians are poorly informed about the availability of such a drug and primary medical organizations do not order oral morphine, habitually using injection forms. Slow-release fentanyl patches are available, but again, more training is required for health professionals to properly prescribe and administer these medicines.

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The following are barriers that exist in the health-care system and stand in the way of many people receiving high-quality palliative care where and when they needed it most: • Inadequate training in pain and symptom management, as well as other palliative care skills, among health-care professionals dedicated by medical organizations to provide in-­ home care • Lack of material and technical preparedness of medical organizations for home care • Insufficient guidelines for the provision of assistance to palliative cancer patients • Regulatory restrictions, for example, the mobile team is prohibited from carrying strong analgesics (opioids have to be prescribed only by the district primary care clinic and obtained in a designated pharmacy) • Insufficient use of instruments and indicators to assess the quality of care provided • Low remuneration for palliative care employees working with a high load of psycho-­ emotional stress • Prevalence of paternalistic versus patient-­ centered attitudes in modern health care • Underestimation of the benefits brought by the multidisciplinary palliative care team as part of medical organizations (time and budget saving, relieving social tension, providing continuity of care, improving statistics, supporting positive image of medical organizations, etc.)

Conclusion No matter how much funding, effort, and resources are invested, the most reliable indicator of the level of palliative care development in the country will be the patients’ satisfaction with the quality of care. The results of a survey we conducted among 88 recipients of in-home palliative care in Almaty, aimed at studying satisfaction, showed: satisfaction among our patients (15.9%), their ­ family carers (36.4%), and both (47.7%). Without going into details of this survey, it was revealed that 100% of the respondents at the

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time of the first visit were in need of medical assistance for relief of pain and other symptoms, organization of care and training of relatives in nursing skills, providing psychological support to the patient and family members and social support to the family. Only 13.63% of all recipients reported that they needed spiritual support. 88.6% reported a general improvement in their condition as a result of the mobile team’s interventions; 9.1% reported no improvement, and 2.3% reported a deterioration in their condition. 84.1% of respondents scored professional competence of team members as excellent (5/5), 11.4% as good (4/5), and 4.5% as satisfactory (3/5). The majority of patients (79.5%) said that they prefer to receive palliative care at home if the support of mobile team is provided, while 20.5% wished to receive in-patient hospice care. The general level of satisfaction with the performance of the mobile team, on a scale from 1 to 5, was as follows: “5” (84.1%), “4” (11.4%), and “3” (4.5%). Despite the fact that this survey was modest in scope, it provided additional evidence that in-­ home palliative care significantly increases patient satisfaction while reducing the need of more expensive medical services at the end of life, such as hospice facilities. With more evidence in place, local champions will be better armed to advocate for broadening access to palliative care through the introduction of home-based services.

References 1. Kaidarova D.  Cancer control plan for 2018–2022. 2018. Retrieved from https://onco.Kz/news/razrabotan-proekt-kompleksnogo-plana-po-borbe-s-onkologicheskimi-zabolevaniyami-na-2018-2022-gody/. 2. CancerRegister.n.d..Retrievedfromhttps://www.ezdrav. kz/61-elektronnyj-registr-onkologicheskikh-bolnykh. 3. Order of the Minister of Health of the Republic of Kazakhstan, November 14, 2013. No. 657 On Approval of the Standards for Providing Palliative Care in the Republic of Kazakhstan. Available from http://www.rcrz.kz. Accessed June 2015. 4. Institute of Medicine (US) and National Research Council (US) National Cancer Policy Board. In: Foley KM, Gelband H, editors. Improving palliative care for cancer. Washington, DC: National Academies Press

G. Kunirova et al. (US); 2001. From: https://www.ncbi.nlm.nih.gov/ books/NBK223534/. 5. On Approval of the Standard for Organization of Palliative Care to the Population of the Republic of Kazakhstan. Decree of the Minister of Health of the Republic of Kazakhstan #657, dated November 14, 2013. From: https://tengrinews.kz/zakon/pravitelstvo_respubliki_kazahstan_premer_ministr_rk/ zdravoohranenie/id-V1300008956/. 6. Planning and implementing palliative care services: a guide for program managers/ISBN: 978-92-4-­ 156541-7 (NLM classification: QV 250) © World Health Organization, 2016 https://apps.who.int/iris/ bitstream/handle/10665/250584/9789241565417eng.pdf. 7. Morris C.  Universal health coverage and palliative care. London: Worldwide Hospice Palliative Care Alliance; 2014. 8. Knaul FM, Farmer PE, Krakauer EL, De Lima L, Bhadelia A, Kwete XJ, Arreola-Ornelas H, Gómez-­ Dantés O, Rodriguez NM, Alleyne GA, Connor SR.  Alleviating the access abyss in palliative care and pain relief  – an imperative of universal health coverage: The Lancet Commission report. Lancet. 2017;391:10128. 9. WHO Declaration of Astana. October 2018, www. who.int/primary-health/conference-phc/declaration. November 20, 2018. On Declaration of Alma-Ata International Conference on Primary Health Care, Alma-Ata, USSR, September 6–12, 1978. www.who. int/publications/almaata_declaration_en.pdf?ua=1 (Last accessed November 20, 2018). 3. Knaul FM, Farmer PE, Krakauer El, et al.; on behalf of the Lancet Commission on Palliative Care and Pain Relief Study Group. 10. Global Atlas of Palliative Care at the End of Life. Edited by Stephen R.  Connor, PhD, Senior Fellow to the Worldwide Palliative Care Alliance (WPCA), Maria Cecilia Sepulveda Bermedo, MD, Senior Adviser Cancer Control, Chronic Diseases Prevention and Management, Chronic Diseases and Health Promotion, World Health Organization Worldwide Hospice Palliative Care Alliance 2014. ISBN: 978-0-9928277-0-0. 11. Kazakh Association of Palliative Care //http://www. palliative.kz/. 12. Ministry of Health Care of the Republic of Kazakhstan n.d. Retrieved from http://dsm.gov.kz/ru/kategorii/ gobmp-i-osms. 13. World Cancer Leader’s Summit n.d. Retrieved from https://www.uicc.org/what-we-do/convening/worldcancer-leaders-summit/2019-world-cancer-leaderssummit 14. Order of the Ministry of Health of the Republic of Kazakhstan No. 30 dated 31, January 2019. On Approval of the Roadmap for the Improvement of Palliative Care in the Republic of Kazakhstan for 2019–2020. 15. World Health Organization. Planning and implementing palliative care services: a guide for programme managers. World Health Organization 2016. https:// apps.who.int/iris/handle/10665/250584

Part XXX South Asia: Pakistan

Provision of Palliative Care for Oncological Patients in Pakistan: A Review of Challenges and Current Practices Muhammad Atif Waqar, Nasreen Muhammad Saleem, and Muhammad Shamvil Ashraf

Introduction Pakistan is the sixth most populated country in the world with more than 200  million people, with approximately 37% of the population above 60 years of age and an average life expectancy of 66 and 67  years in males and females, respectively [1]. It is predominantly an Islamic country. It is ranked 186th out of 189 countries in the matter of total expenditure on health as a percentage of the gross domestic product (GDP), with 45% of the population living below the poverty line. Cancer has emerged as a major health issue within Pakistan. Although oncological services in the country have progressed over the past few decades and is now better rooted for curative oncology, preventive oncology and palliative care services are still poorly developed [2]. Palliative medicine in Pakistan is a fairly new discipline with only handful of institutions providing specialized services to those in need [3]. M. A. Waqar (*) · N. M. Saleem Section of Palliative Medicine, Department of Oncology, The Aga Khan University Hospital, Karachi, Pakistan e-mail: [email protected]; [email protected] M. S. Ashraf Indus Health Network and Consultant Pediatric Oncology, The Indus Hospital, Karachi, Pakistan

The remaining burden of palliation has been shared by oncologists, internists, and family physicians of the country with little or no training in palliative medicine. This results in enormous unmet needs of palliative care for those suffering with life-limiting illnesses. This chapter aims to examine the current state of palliative medicine in Pakistan with a review of challenges, existing services and models, resources, and future prospects.

 urrent Palliative Care Landscape C in Pakistan The International Observatory at the End of Life Care (IOELC) published a survey of palliative care facilities around the world and have observed a “least favorable ratio” of patients served by palliative care facilities in Pakistan as only one service was identified for a population of 157,935,000 [4]. The Worldwide Hospice Palliative Care Alliance (WHPCA) published a global atlas of palliative care development in each country around the world and, in their assessment, they observed that 12 years: 1.5 mg/24 hours

1–2 mg/dose or 8 mg/day 0.15 mg/kg/day 2 mg/dose 5 mg/kg/24 hours or 400 mg/24 hours 4 mg/kg/24 hours

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Table 1 (continued) Symptom Nausea/ inflammation Pain

Medication Dexamethasone Acetaminophen (mild pain) Ibuprofen (mind pain) Oxycodone (moderate pain)

Morphine (moderate pain)

Gabapentin (adjunct for neuropathic pain) Amitriphyline (adjunct for neuropathic pain)

Common pediatric dose (1 time/month 8. Hospital admission without meaningful clinical treatment 9. ICU admission without meaningful clinical treatment

Medical care in hospital

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Homecare preparation*

Homecare

Home care in Indonesia is made possible by referral back system of the Indonesian National Health System where patients are referred back to Primary Health Center (PHC) after treatment in hospital. The main problems of palliative care after hospital treatment are lack of hospice care, social worker, and case manager of patients at post-hospital treatment. The available service is centralized in metropolitan and capital city, and done by an NGO. There is no standardized care, and not all patients need the treatment covered by the said service. The culture of Indonesian people from marginal areas is to spend the rest of their lives in the home without the aid of health care professionals. Although a regulation of palliative care is already established, hospice and home care regulations in oncology patients were lacking. The health care professionals are not protected by the law while caring for oncology patients. There is no standard of care set by the policymakers and standardized outcome to be achieved. Thus, home care is only performed by certain health care institution, mainly in central referral in every province. Financing is one of the problems faced in palliative care in Indonesia. Palliative care is taking a significant amount of cost needed in health care. Many patients in Indonesia could not afford the care for oncology patients. The national health insurance provided by Indonesian government only has limited and without home care

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coverage. Many patients depend on external financing such as non-governmental organization (NGO). Indonesia has only limited resources given to palliative care in neuro-oncology patients. There were only 20 neuro-oncologists, 90 medical oncologists, and a few palliative care specialists in Indonesia. The distribution of those professionals is sparse. The facilities to treat neuro-­ oncology patients are limited in the capital of the provinces and metropolitan cities. Thus, the education of hospice care is difficult, due to fear of patients going back home without palliative care facility. Although it seems pessimistic, an effort to enforce palliative care services for patients has already started in Indonesia. In many AHC and referral hospitals, tumor board meetings have already been set up. Hopefully in the near future, palliative care services in Indonesia could fulfill the needs of palliative patients and families so that their quality of life will be better.

References 1. Mummudi N, Jalali R. Palliative care and quality of life in neuro-oncology. F1000Prime Rep. 2014;6 2. Borasio GD, Bausewein C, Lorenzl S, Voltz R, Wasner M. Palliative care in neuro-oncology. In: Tonn J-C, Reardon DA, Rutka JT, Westhpal M, editors. Oncology of CNS tumors. Berlin: Springer-Verlag; 2010. 3. Burnet NG, Bulusu VR, Jefferies SJ. Management of primary brain tumours. In: Booth S, Bruera E, editors. Palliative care consultations: primary and metastatic brain tumours. New  York: Oxford University Press; 2004. 4. Soffietti R, Franchino F, Ruda R.  Brain metastasis as complication of systemic cancers. In: Schiff D, Arrilaga I, Wen PY, editors. Cancer neurology in clinical practice: neurological complications of cancer and its treatment. 3rd ed. USA: Springer; 2018. 5. Sitorus JJR, Agiananda F, Aninditha T, Wiguna T, Lukman PR.  Distres in brain tumor patients and its related factors. Neurona. 2017;34(2):91–6.

T. Aninditha et al. 6. Higginson IJ, Evans CJ. What is the evidence that palliative care teams improve outcome for cancer patients and their families? Cancer J. 2010;16(5):423–35. 7. Comelli G, Lippi G, Campana V, Servadei F, Cervellin G.  Clinical presentation and epidemiology of brain tumors firstly diagnosed in adults in the emergency department: a 10-year, single center prospective study. Ann Transl Med. 2017;5(13):269. 8. Faithfull S, Cook K, Lucas C.  Palliative care of patients with a primary malignant brain tumour: case review of service use and support provided. Palliat Med. 2005;19:545–50. 9. Klein M, Engelberts NHJ, van der Ploeg HM, Trenite DGAK, Aaronson NK, Taphoorn MJB, et al. Epilepsy in low-grade gliomas: the impact on cognitive function and quality of life. Ann Neurol. 2003;54(4):514–20. 10. Thomas AA, Carver A. Essential competencies in palliative medicine for neuro-oncologists. Neurooncol Pract. 2015;2(3):151–7. 11. Parks DH, Chun MH, Lee SJ, Song YB. Comparison of swallowing functions between brain tumor and stroke patients. Ann Rehabil Med. 2013;37(5):633–41. 12. Pace A, Di Lorenzo C, Guariglia L, Jandolo B, Carapella CM, Pompili A. End of life issues in brain tumor patients. J Neuro-Oncol. 2009;91:39–43. 13. Amidei C, Kushner DS.  Clinical implications of motor deficits related to brain tumors. Neurooncology Pract. 2015;2(4):179–84. 14. Ijzeman-Korevaar M, Snijders TJ, de Graeff A, Teunissen SCCM, de Vos FYF. Prevalence of symptoms in glioma patients throughout the disease trajectory: a systematic review. J Neuro-Oncol. 2018;140:485–96. 15. van Kessel E, Baumfalk AE, van Zandvoort MJE, Robe PA, Snijders TJ. Tumor-related neurocognitive dysfunction in patients with diffuse glioma: a systematic review of neurocognitive functioning prior anti-­ tumor treatment. J Neuro-Oncol. 2017;134:9–18. 16. Gertsnecker A, Nabors LB, Meneses K, Fiveash JB, Marson DC, Cutter G, et al. Cognition in patients with newly diagnosed brain metastasis: profiles and implications. J Neuro-Oncol. 2014;120:179–85. 17. Madhusoodanan S, Ting MB, Farah T, Ugur U. Psychiatric aspects of brain tumor: a review. World J Psychiatr. 2015;5(3):273–85. 18. Arnold SD, Forman LM, Brigidi BD, Carter KE, Schweitzer HA, Quinn HE, et al. Evaluation and characterization of generalized anxiety and depression in patients with primary brain tumors. Neuro-Oncology. 2008;10(2):171–81. 19. Palliative Care Policy. 2007 Jul 19; 812/Menkes/SK/ VII/2007. 20. Ministry of Health Republic of Indonesia. National Guidelines of Cancer Palliative Program. Jakarta: Indonesia; 2015.

Establishment of Home-Based Pediatric Palliative Care: The Indonesian Experience Lynna Chandra and Ying Pin Toh

Background

tem and, at the time, there were few community services serving the poor. Patients were disRachel House was established in 2006 to provide charged from hospitals with minimal support in palliative care for children living with life-­ the community setting. The only available avethreatening illnesses, in particular, cancer and nue, when crisis hit, was for patients to be rushed HIV. At that time, palliative care was not widely back to the hospital, if finances permitted. known [1–3], with the development of the local palliative care policy only in 2007 by the Ministry of Health of Indonesia [1, 3]. Indonesia is part of Hospice or Home Care Southeast Asia and one of the most populated countries in the world [1]. The experience of Eka,1 a 12-year-old boy diagThe initial intent when Rachel House was set nosed with acute myeloid leukaemia, influenced up was to build a 60-bed inpatient facility. The the decision to switch from a hospice to a home decision was subsequently made to convert the care model for the delivery of community palliaservice to follow a home-based palliative care tive care. Eka was referred to Rachel House in the model, responding to the needs and demands of early part of our journey, having been discharged the children and the families Rachel House was from the hospital after enduring months of treatmeant to serve, many of whom were from mar- ment that, unfortunately, did not curb the proginalized communities. gression of the disease. He was referred to Rachel The added challenge was that the home care House’s inpatient service with a large wound at model was new to the Indonesian healthcare sys- the perineum that bled profusely. Despite his ­difficulties, Eka strongly desired to go home and flatly refused further institutional care. He cited L. Chandra (*) friends and home-cooked meals as the two overRachel House (Yayasan Rumah Rachel), riding factors for this decision - even when going Jakarta, Indonesia home meant sleeping on a thin mattress on the International Children’s Palliative Care Network, dirt floor in the living room of a house that meaAssagay, South Africa e-mail: [email protected] sured no larger than 3 m × 3 m. During the six weeks of journeying with Eka, the Rachel House Y. P. Toh Rachel House (Yayasan Rumah Rachel), Jakarta, Indonesia Asia Pacific Hospice Network, Singapore, Singapore

Name has been changed to protect the privacy of the child.

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team organized a movie screening in his home, where Eka lay on his mattress surrounded by his friends, enjoying the camaraderie! This story demonstrates the child’s hunger for the simple joys of home and childhood.

Referral: The Early Days As palliative care was in its infancy when Rachel House started, convincing doctors to refer patients to Rachel House was challenging. Through Rachel House, palliative care was introduced to the hospitals in Jakarta as a service to help manage the pain and symptoms of patients at the end of life or when prognosis was poor. Nurses in the wards were quickly won over to the concept of palliative care. They saw this as a way to help relieve the symptoms of their patients who were being discharged home, and as a layer of support for the families, especially when parents faced the anxieties of caring for an ill child at home. With the support of nurses from hospitals, Rachel House was increasingly invited to participate in discussions with the families of children with poor prognoses prior to discharge into the community. Advocacy for palliative care grew despite challenges within a setting where doctors were pressured to “fight till the end” because parents expected them to.

 alliative Care Knowledge: P Changing Mindset and Culture As Rachel House began caring for more patients, the ward doctors and oncologists began to show interest in learning more about palliative care. Advocating for pain control was a major hurdle to cross. In the early years of palliative care in Indonesia, pain management was not a priority. In the past, doctors in Indonesia had been taught that treating pain would mask the source of pain and confound the diagnostic process. Rachel House would receive children with late-stage cancer being discharged with weak analgesics, as morphine was rarely prescribed. Wound dressings of cancer patients were frequently changed

without consideration for pain or the need for analgesia. Pain was accepted as part of the local culture and as part of the illness journey. Advocating for increased awareness regarding the need to address pain took time. Eventually, doctors began to see the need to manage pain and patients gained confidence that pain could be sufficiently controlled during the cancer journey.

 ome-Based Palliative Care-Team H Composition When Rachel House first started out, palliative care was a concept new to Indonesia. The biggest question then was that of the team composition. At Rachel House, where the target patient population was children from marginalized communities who were faced with life-limiting and life-threatening illnesses, the goal was to provide care at home, hence the decision was made to develop a nurse-led home hospice team. As the team matured, Rachel House was faced with the challenge of training nurses in critical thinking, clinical excellence, and leadership. The idea of a nurse-led team was novel to the local hierarchical healthcare system where doctors were the usual leaders of healthcare teams [4]. Role modelling by nurses trained in palliative care and experienced in providing community-­ based care was the most powerful tool, inspiring the wider nursing community to see potentiality above and beyond what they had been taught.

“Aha!” Moments How can we encourage doctors and nurses to turn towards suffering of their patients, and respond?

Turning Towards the Suffering During a ward round attended by several palliative care experts from Singapore at a local children’s oncology ward in Jakarta, a palliative care physician stopped on the way out of the room to

Establishment of Home-Based Pediatric Palliative Care: The Indonesian Experience

speak to the father of a child whose medical issues had just been discussed. Dr. Rosalie Shaw, from Singapore, quietly asked for an interpreter as she knelt down in front of the man who was sitting quietly on the floor. Dr. Shaw asked how long he had been staying at the hospital and invited him to talk about the journey he and his daughter had taken to reach the hospital from their village. As the child’s father spoke, tears started streaming down his face. He said, “I have been here for 3 weeks. This is the first time anyone has spoken to me and asked me about my journey.” At that moment, a sacred silence of communion came upon all present. Hearts were opened to realize that although this is the father of the child, no one had noticed he was there or engaged him in the discussion of his child’s illness. Palliative care demonstrated to local hospitals that healing must embrace all facets of a child’s life, addressing her emotional and spiritual needs as well as her physical ailments. And in matters of the social and emotional aspects of care, parents must be included in the realm of medical professionals’ care as well as part of the care team to ensure the child’s well-being [5]. Responding to the suffering of patients requires healthcare professionals to have the courage to care, to witness, and to respond. This is particularly critical in the setting of patients’ homes. This lesson, gleaned at an early stage of Rachel House’s journey, formed an integral part of its mission.

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embraced by a team to guide them in providing care in a manner that would keep Aji comfortable. During the last 15  months of Aji’s life, Rachel House arranged to celebrate his birthday surrounded by loved ones and visited by his favorite clown and celebrity idol.

I t Takes a Village: Community-Based Approach A wealth of resources exists within a community that is often untapped in the provision of medical care, particularly for children living with life-­ limiting, life-threatening illnesses and their families.

 he Role of Kader2 Women T (Community Health Workers) When we began our journey into the homes of the children referred to Rachel House, we came across neighbors who offered their concerns, shared their knowledge, and generously gave their time beyond our expectations. Soon, these neighbors, many of them women, became part of our care team and introduced us to the culture and wisdom of the community, extensive knowledge which we otherwise would not have been able to obtain, or which would have taken us much time to develop.

Training of “Kader” Women What are the roles of these women?

Aji was an 8-year-old child with incurable cancer who was faced with a prognosis of only a few weeks. The availability of Rachel House’s home care team meant that Aji could be cared for at home, braving the devastating symptoms he experienced in the last few months of his life, such as neuropathic pain, bedsores, constipation, loss of appetite, loneliness, and anger. His wonderfully caring mother had a “life-line” to home palliative nurses through a 24-hour-a-day telephone hotline. This allowed the family to be 1

1. To identify people in the community who are living with life-limiting illnesses and need assistance. 2. To connect them to available networks of assistance, such as food, transport, medications, or even simply to community members ‘Kader’ is Indonesian for  cadre; health cadres are frequently engaged to  render non-clinical aspects of  care in the Indonesian healthcare setting.

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who can help clean their homes, wash their clothes, or cook a simple meal. 3. To provide assistance and help them navigate the often complex health system to access care. 4. To accompany and help provide care for these people living at home with life-limiting illnesses, and to provide respite to their caregivers.

L. Chandra and Y. P. Toh

without her. To coax Abi to attend his appointment, our community health worker, offered him a trip on the new Metro in the city as a reward for attending the hospital visit. Not surprisingly, a trip to the hospital is often complex and hugely negotiated requiring close teamwork between different members of the multidisciplinary team.

Key Learnings from Rachel House’s Journey These Kader women are now an integral part of the Rachel House team and an important part 1. Caring for the Whole Person: An Empowered Team of the care we provide to our patients. They are Patients need to be cared for as a whole not only powerful partners to our clinical team, person. Palliation of physical pain and sympproviding deep and wise insights to the socio-­ toms cannot be addressed separately from emotional aspects of the lives of patients, shedsocial, emotional, and economic aspects. ding light on their needs and priorities, but just as Team members must be empowered with supimportantly, act as soothing balm for the patients port of the organization and stakeholders to and their families providing them comfort during help alleviate these socioeconomic chalfrightening and difficult times. lenges, beyond the physical symptoms. This renders a sense of hope and mitigates against burnout and feelings of helplessness derived Case-Based Illustrations from working in a limited-resource setting. Close teamwork to overcome the multi-­ The story of the grandmother of one of our dimensional issues faced by patients helps to patients, Allya,1 clearly illustrates this. Allya is a child with complex medical needs. Being Allya’s build strong solidarity amongst team memsole caregiver, her grandmother could not attend bers, and importantly, allows the humanity in a wedding she was invited to as there was no one each and every member to blossom. A powerelse to care for Allya, whose parents had died. Ibu ful reminder that they are not just healthcare Eny, one of our Kader women, not only offered to professionals, but to quote Ram Dass, “We take care of Allya that evening, but also brought are all walking each other home.” her make-up kit to ensure that Allya’s grand- 2. Caring for the Child and Family Supported mother was beautifully made up for the event. by the Community These women from the community allowed A child’s well-being is very much depenRachel House to embrace patients and families dent on the primary caregiver’s presence and holistically. capacity. Caregivers of the children need to be Another example is the day when Abi, a seen as part of the care team and their needs 5-year-old boy, went for his first metro ride with should be supported. Successful and effective one of our community health workers. Abi’s care for children living with life-limiting illgrandmother, his sole caregiver, was frail and too nesses at home can only happen when families weak to take him to the hospital. So, Abi would are supported and communities are empowhave to go to the hospital with our community ered to care for them. To be able to deliver this health worker instead, where he would be met by well, Rachel House has had to lean on the one of our nurses who would accompany Abi to support of community members – the “Kader” meet his doctor. Abi was very attached to his women, including them as part of the care grandmother and reluctant for the hospital visit team.

Establishment of Home-Based Pediatric Palliative Care: The Indonesian Experience

References 1. Agency CI. Central Intelligency Agency – The World Factbook 2009. Available from: https://www.cia. gov/library/publications/the-world-factbook/geos/ id.html. 2. Putranto R, Mudjaddid E, Shatri H, Adli M, Martina D.  Development and challenges of palliative care in Indonesia: role of psychosomatic medicine. Biopsychosoc Med. 2017;11:29.

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3. Rochmawati E, Wiechula R, Cameron K. Current status of palliative care services in Indonesia: a literature review. Int Nurs Rev. 2016;63(2):180–90. 4. Arisanti N, Sasongko EPS, Pandia V, Hilmanto D. Implementation of palliative care for patients with terminal diseases from the viewpoint of healthcare personnel. BMC Res Notes. 2019;12(1):217. 5. Jones BL, Contro N, Koch KD. The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring. Pediatrics. 2014;133(Suppl 1):S8–15.

Part XXXIII South Asia: Thailand

Network of Primary Palliative Care in Thailand: A Prototype Driven by Education Srivieng Pairojkul

 ackground of Thailand’s Health B Security System Over the last four decades, Thailand has made remarkable progress in social and economic development, moving from a low-income to an upper-income country in less than a generation [1]. According to the National Statistical Office, the total population of Thailand in 2018 was 66 million, with one-third residing in the Northeastern region. Life expectancy at birth was 73  years for males and 80.1  years for females. One-sixth of the population (11.3 million) are elderly [2]. Concerning health service accessibility, Thailand has been recognized as one of the countries with a successful health development [3]. The Ministry of Public Health (MOPH) is the key health authority responsible for planning, implementing, monitoring and evaluating health policy and service implementation. There are other autonomous health agencies that have been established through legislation, notably the Health Systems Research Institute (HSRI, 1992), the Thai Health Promotion Foundation (ThaiHealth, 2001), the National Health Security Office (NHSO, 2002), the National Health

S. Pairojkul (*) Karunruk Palliative Care Center, Faculty of Medicine, Khon Kaen University, Khon Kaen, Thailand e-mail: [email protected]

Commission Office (NHCO, 2007) and the Healthcare Accreditation Institute (HAI, 2009) [3]. Thailand’s policy on universal health coverage (UHC) has made good progress since its implementation of the National Health Security Act in 2002 [4]. Ninety-nine percent of the population have access to health insurance under three schemes: Universal Health Insurance, the Social Security Fund and the Civil Servants Medical Benefit Scheme [3]. Every Thai citizen is now entitled to essential health services at all life stages. The benefits of the policy comprise essential services in preventive, curative and palliative care for all age groups. Extension of coverage to high-cost services, such as renal replacement therapy, cancer therapy and stem-cell transplants, has improved financial protection for patients. Well-coordinated district health systems enable individuals to seek care or referral at health units close to home. The resulting increase in service utilization has contributed to a low prevalence of unmet needs for outpatient and inpatient services [3]. Most health care services in Thailand are delivered by the public sector, which includes 1002 hospitals and 9765 health stations. The public hospitals are operated by the Ministry of Public Health and are classified as: • Regional hospitals are located in the center of the province, have a capacity of at least 500 beds and have a comprehensive set of

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s­ pecialists. As of 2018, there are 34 regional hospitals. • General hospitals are located in province capitals or major districts and have a capacity of 200 to 500 beds. There are 86 general hospitals. • Community hospitals are located in the district level and further classified by size: –– Large community hospitals have a capacity of 90 to 150 beds. –– Medium community hospitals have a capacity of 60 beds. –– Small community hospitals have a capacity of 10 to 30 beds.

calls for multisectoral collaboration in the community using strategic approaches called “U-CARE”: Unity district health team; Community participation; Appreciation; Resource sharing and human development; Essential care provision. It is also believed that the DHS could become an active participatory model that can harmonize upstream and downstream processes of health service systems in Thailand [5].

Thailand Cancer Epidemiology

In 2018, cancer was the leading cause of death in Thailand, accounting for 19% of mortality, followed by ischemic heart disease (12%) and stroke (10%) [6]. The summary cancer statistics in 2018 were: Number of new cancer cases 170,495; number of cancer deaths 114,199; the top five most frequent cancers in males, excluding non-­ melanoma skin cancer, were liver, lung, colorecPrimary Health Care System tum, prostate and gall bladder, while in females were breast, cervix, uteri, colorectum, lung and in Thailand liver [7]. In 2019, the Karunruk Palliative Care Center The Thai Ministry of Public Health tackles health inequity through three major policies: (1) Region-­ and the Thai Palliative Care Network conducted a based health services system. This policy aims to multicenter point prevalent survey of palliative facilitate better sharing of resources within each care in patients from 14 hospitals in Thailand and region including funding, human resources, found that 18.7% met the criteria of life-limiting information and medicines/technologies, and to illness [8]. Fifty-five percent were patients with strengthen referrals across care levels within cancer, while 44.4% were patients who were regions toward more efficient services. For health defined as noncancer (Table  1). Only 17.3% of care service there is a referral system which facil- these palliative patients were under the care of itates referring upstream and downstream the hospital palliative care program, reflecting between primary health units to community hos- the under-diagnosis and lack of awareness of the pitals and to higher health facilities at provincial doctors. The majority of palliative patients being hospitals or regional hospitals (2). Health services development plans or ‘Service Plans’, treated by palliative care teams had cancers, as which comprise primary and holistic health care cancer patients have more access to palliative as one of 15 Service Plans that all health facilities care services. Our point prevalence survey under the MOPH will use as their operation plan showed that 22.7% of cancer patients received and for implementation. The goals of these pri- palliative care consultation compared to 11.9% mary care and holistic care Service Plans include of noncancer patients. The cancer patients pricare provision by family care teams and estab- marily received treatment at the regional hospilishment of long-term community care and health tals, where there are cancer centers. When promotion for the elderly, disabled and vulnera- reaching the palliative phase they are usually ble groups (3). District health system (DHS) that referred to the palliative care team, who provide There are, in all, 723 community hospitals. Their capacity is usually limited to providing primary care, while referring patients in need of more advanced or specialized care to general or regional hospitals.

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Table 1  Point prevalence of palliative care patients in 14 hospitals in Thailand Hospital Level Super tertiary Tertiary Secondary Total

Hospital No.

All patients

PC Patients

% PC Patient

2 7 5 14

1148 3216 1399 5763

212 631 236 1079

18.5 19.6 16.9 18.7

Cancer (%) No. 153 315 73 600

% 72.2 49.9 30.9 55.7

Noncancer (%) No % 59 27.8 316 50.1 163 69.1 538 44.4

sure with mainstream service providers [9]. Since palliative care services were not integrated into the Service Plan of the MOPH, there was no career path and no financial support or time allocation for the personnel. The services were run on volunteer basis. The situation had been perpetuated due to the lack of doctors’ education. The policy for palliative care developed very slowly, and it was in 2006 that the Healthcare Accreditation Institute included several palliative care indicators, including pain management and psychosocial/spiritual care into hospital accrediPalliative Care Development tation. In 2009, the National Health Security in Thailand Office provided support for hospitals to develop a Access to Palliative Care palliative care network. Many provincial hospitals, the majority in the northeast of Thailand, Palliative care was first recognized during the had begun to develop a network with their comAIDS epidemic, but the care provided was mainly munity hospitals, but still there was no symptom psychosocial and spiritual. Most programs were management. At that time, Karunruk Palliative run by a nurse who was compassionate and pro- Care Center was the only center that provided vided spiritual care for the patients by organizing multi-level training programs. In 2014, the religious ceremonies for the patients and their Ministry of Public Health issued a health policy families. These programs lacked elements of pain stating that by December 2014 every provincial and symptom management, and rarely was there hospital was required to have a full-time nurse a doctor involved in the program. The active ser- (trained in PC) coordinating the hospital palliavices were provided by faith- and religion-based tive care unit and this would increase to 300 comfacilities such as the Camillian Social Center, St. munity hospitals by September 2015. With the Clare’s Hospice and Mercy Center, which also implementation of this policy, palliative educaprovided antiviral drugs and palliative care ser- tion was in dire need. In 2016 we developed a vices. A Thai temple called Wat Phra Baht Nam strong network in Service Plan area 7, which was Phu, located in the hills of Lopburi 120 km north composed of four provincial hospitals and 62 of Bangkok, provided care for patients with late-­ community hospitals in the northeast region of stage AIDS who were rejected by their families. Thailand, by implementing a training curriculum After the introduction and availability of antiviral which offered multi-level training for professiondrugs under the universal coverage policy, the als and received financial support from the AIDS epidemic subsided and palliative care was National Health Security Office. The networks then confined to advanced-cancer patients. In were so strong that palliative patients could be 2012, Thailand’s palliative care services were referred to care and die at their homes under the classified in the Group 3a, which is localized pal- supervision of community networks. It was in liative care provision, but not yet reaching a mea- 2016 when palliative care was integrated into the continuous care if they are in the city area, but if they are in the district area or in other provinces, they are referred to the palliative care team in the community hospital and will be under the care of the district team until death. Most cancer patients receive palliative care continuously by the community palliative care team and the majority of the patients in the northeast, the north and the southern part of Thailand die at home.

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MOPH Service Plan, which was a big leap in palliative care development. We received financial support from the Thai Health Promotion Foundation to create a community network in the northeast region of Thailand using our training curriculum and the lessons learned from the network development of Service Plan area 7. The northeast region comprises of one-third of the entire country’s population. The networking process continued to extend to the northern and the southern regions of Thailand in 2018, under the collaboration between Karunruk Palliative Care Center and the MOPH and with funding from Khon Kaen University. In 2019, we started a network in the central part of Thailand and in 2020 are moving forward to Bangkok’s metropolitan area. Palliative home care has been endorsed by the National Health Security Office since 2016 by providing e-claim for palliative home care, which has had a great impact on palliative home care services.

Palliative Education Changing or developing appropriate attitudes and practices among healthcare professionals regarding end-of-life care is important for enhancing the system’s development which can be achieved through training and exposure with practical sessions. In the past, most of the educational programs were provided by medical school-based hospitals at an annual conference, primarily focusing on psychosocial/spiritual care. There were barely any palliative care programs in public hospitals and, if there were, they were mostly run by nurses who volunteered their extra time with no support from the hospitals. The National Cancer Institute and regional cancer centers, both of which are under the MOPH, started a home-­ care program in 1998, with management of pain and supportive care as the main focus [10]. Most palliative patients, when being discharged from the hospitals, would be followed-up by the primary care team in the community who did not receive any palliative training. Most medical schools had integrated palliative care education in their curriculums but with no

practice sessions, and some medical schools did not have any palliative care unit at all; the education was then more likely based on opportunity. Most doctors graduated with only little knowledge of palliative care, not to mention the lack of skills in cancer pain management and the use of opioids. The nursing curriculum contained more topics related to palliative care, but mostly emphasized psychosocial/spiritual care, and pharmacists and social workers rarely received any training in palliative care. When training in palliative care, it is important to have an opportunity to practice, as symptom management and communication skills must be used in real contexts. In 2012, Phungrassami conducted a national survey on a number of palliative care-­ trained personnel, and there were only a handful of doctors trained through intermediate or long-­ term courses; of these numbers, 12 doctors had graduated from more than one year of training and six graduated from at least a one-month course. Most of them were in medical schools. Only 40 doctors graduated from a